Ellis C Fish1, Anna Lloyd2. 1. College of Medicine & Veterinary Medicine, The University of Edinburgh, Edinburgh, UK. 2. St Columba's Hospice, Education and Research, Edinburgh, UK.
Abstract
BACKGROUND: Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives. AIM: To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level. DESIGN: In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives. SETTING/PARTICIPANTS: Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland. RESULTS: Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed. CONCLUSIONS: Restrictions had a considerable impact on palliative care doctors' ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced.
BACKGROUND: Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives. AIM: To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level. DESIGN: In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives. SETTING/PARTICIPANTS: Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland. RESULTS: Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed. CONCLUSIONS: Restrictions had a considerable impact on palliative care doctors' ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced.
Entities:
Keywords:
COVID-19; communication; hospice care; moral distress
What is already known about this topic?Palliative care was significantly disrupted by the COVID-19 pandemic.Restrictions affected communication between doctors and patients.What this paper adds?Reduced ability to comfort patients caused moral distress amongst palliative
care doctors.Doctors made efforts to re-humanise interactions.Implications for practice, theory or policyHumanisation of communication between doctors and patients should be a
priority during disruptions to care delivery.
Introduction
The COVID-19 pandemic has led to major changes in the way healthcare professionals
work and presented unique challenges for both patients and staff. Doctors have had
to adapt to new Personal Protective Equipment (PPE) and physical distancing
measures, and minimise face to face contact with patients and relatives. These
restrictions have altered many tacit and often subconscious non-verbal behaviours
such as smiling, communicative touch and physical proximity which are key to
relationship formation between doctors and patients.
This is especially salient in palliative care where good communication is
essential for adequate assessment of symptoms as well as managing expectations of
patients and their families with communication that is open and compassionate.
The changes we have seen may be in place long-term and it is therefore
important to understand the impact on doctors and to investigate the ways in which
they are adapting and coping. Previous literature has explored the experiences of
healthcare workers across a broad range of settings during the pandemic[3,4] and the impact of mask wearing
on communication.
Studies in palliative care have shown an increase in anxiety and
psychological distress amongst healthcare workers,
and a struggle to communicate and connect effectively with patients due to
work pressures and national restrictions.
An emerging consideration in this context is moral distress,[8,9] which occurs when a person is
prevented from taking the action that they believe to be morally right,
and has been shown to be prevalent amongst healthcare workers during the pandemic.
This study aims to present the narratives of palliative care doctors
practicing during the pandemic and facilitate understanding of their
experiences.
Methods
Research question
How do palliative care doctors understand their experiences of working during the
pandemic, at a personal and professional level.
Design
Qualitative narrative-focussed interviews provide a flexible framework to
understand the subjective experiences of participants. Qualitative methods
enable people to use their own terms to articulate responses and can elicit rich
contextualised accounts of their experiences of a phenomena.
A constructivist epistemology that recognises the socially constructed
nature of knowledge where individuals ‘create, negotiate, and interpret
meanings’ within a particular context was used for this
study.[12,13] When ‘normal’ behaviours and interactions are
disrupted, investigating narrative can allow us to contextualise and construct
meaning from lived experiences.
Narrative can simply be defined as a description of a series of events.
Personal narratives can help retrospectively make sense of our experiences by
organising events temporally and understanding them in relation to their outcome
in order to attribute meaning to them. This study aimed to elicit individual
narratives to best understand the participants’ experiences and provide rich
data for analysis.
Setting
While all aspects of palliative care were impacted by the pandemic, our study
focussed on the inpatient unit as this is where doctors had most frequent face
to face encounters with patients and relatives and the research team felt this
would be the most valuable setting to carry out the study. Participants were
recruited from two hospices in central Scotland which provide specialist
inpatient and community-based care to those with supportive and palliative care
needs referred from both primary and secondary care settings and serve a defined
geographical region (NHS Lothian – population 350,000).
Population, sample and recruitment
Eligible participants were doctors who had been working on the in-patient unit
for at least 2 months before the pandemic began and had then worked on the
in-patient unit during the months of March, April, May and June 2020 when
Scotland became affected by the COVID-19 pandemic. A single disciplinary
approach was taken due to the focussed nature of the study. Sampling was
convenience-based due to the limited numbers of doctors working at the hospices.
An email was sent by the research team to all the doctors working in the
hospices with a description of the study and its aims with contact details for
the researcher – EF a female medical student. Those that were interested in
taking part contacted EF and were given information sheets and the opportunity
to ask questions. EF did not know any of the participants prior to the study.
Written consent was gained prior to the interview. EF received training in
qualitative research methods and interviewing and was supported throughout by an
experienced qualitative researcher AL.
Data collection
The primary outcome was to explore the experience of hospice-based doctors
working during the COVID-19 pandemic in comparison to before. Qualitative
research methods focus on meaning and understanding of phenomena rather than
aiming to generalise findings.
Semi-structured interviews were carried out between October 2020 and
February 2021 by EF via video call with only the researcher and participant
present. Interviews are not simply a way to elicit answers from an interviewee
but are interactive with knowledge constructed between and dependent on the
social relationship between the participant and interviewer.
Riessman
considered the types of questions that are likely to elicit narratives
and identified that open questions such as ‘tell me what happened’ and ‘can you
give me an example?’ allow participants to best articulate a narrative. The
interview guide (Supplemental Appendix 1) utilised these open questions whilst
using probes to guide participants to consider issues pertinent to the research.
Follow up questions were generally open, inviting the participant to expand on
events as they came up. A participant information sheet outlined the
researcher’s background and reasons for doing the study. Interviews were
audio-recorded and transcribed verbatim for analysis. Names and places were
assigned anonymous identifiers. A research diary was kept to record comments and
observations from the interviews; this supported later reflection and analysis.
Parallel data analysis was carried out to assess ongoing data saturation and
inform future data collection and analysis.
The sample size was determined according to qualitative research
principles and the aim and scope of the project with recruitment continuing
until no new themes were evident in the data.
Fewer interviews can provide an opportunity for full exploration of
topics with deeper analysis of the data set in comparison to larger samples.
Repeat interviews were not carried out and transcripts were not returned
to participants for comment.
Analysis
Interviews were initially analysed using a paradigmatic approach which aims to
elucidate common themes which hold true across different settings, characters,
and plots. Preliminary themes were coded by EF using the NVivo12 software,
and through repeated listening and reading of the transcripts and
discussion with a senior researcher, emerging themes were refined. This approach
facilitates broad knowledge of a collection of stories but diminishes the unique
aspects of each narrative. Thus, to provide a more in-depth understanding of
participant experiences, narrative analysis was then undertaken to explore
individual narratives. Polkinghorne
offers guidance around this process encouraging the researcher to
consider the ending of the narrative which provides a lens through which further
significant parts of the narrative can be identified and connections between
events and happenings can be explored. The researcher can question which
elements of the narrative are contributing to the outcome, serving to highlight
important turning points. EF listened again to the recordings, this time
considering the structure and shape of the narratives, how participants spoke
about change and for any subplots. Three case stories were compiled to
illustrate the findings and accompanying narratives are presented alongside each
case to compare experiences across interviews.
Ethical permissions
Ethical approval was granted by The University of Edinburgh. This study did not
involve patients nor any modifications of clinical practice. If the interviewees
became distressed they were able to take a break or terminate the interview at
any point. They were also able to withdraw from the study at any point without
giving a reason.
Results
Eight individuals were interviewed. These were five female and three male doctors who
ranged in experience from speciality trainee to consultant. Calls lasted between 17
and 43 min (mean = 27 min). No participants dropped out of the study.One dominant theme emerged across the interviews: moral distress. Two further
distinct but intersecting themes arose: the first concerned a loss of humanity in
interaction; the second being a change in staff morale and mental wellbeing.
Moral distress
During the pandemic, restrictions imposed by national government and local
management forced doctors to act against their instincts: to reduce
communicative touch, limit visiting and spend less time with patients. This
experience of being unable to take the action that one believes to be morally
right due to institutional constraints is known as ‘moral distress’.
ML’s experience best exemplifies this phenomenon.
ML’s story
ML was working with a hospital palliative care team at the start of the
pandemic before returning to the hospice. Throughout ML’s account, the
effect of patient distress on her own experience became apparent. ML’s
experience is inescapably linked with that of her patients.‘I think one of the most distressing things of the pandemic
for me certainly initially was the fact you knew that the
patients had no visitors or very few visitors and they were
lonely’.A key source of distress and anxiety for patients, the visiting restrictions,
was likewise distressing for ML.‘They knew that it wasn’t our fault that we were restricting
the visiting but nonetheless they were angry, they were upset.
You feel a bit helpless really because you can’t make it
better’.In this instance, ML was forced to be the gatekeeper between her patients and
their relatives, a role which was new and unsettling for her. She was unable
to take the action she believed to be morally right which resulted in a
feeling of helplessness.‘And I think you felt you had to give even. . . I guess try
and give even more kind of comfort to the patient. But at the
same time, you were trying to keep your visits quite short, you
were very conscious that you were trying to sit much further
away. . . almost feeling you were constantly kind of balancing
the risks and the benefits in the individual
situation’.In saying ‘you felt you had to’. ML is expressing guilt about the lack of
visiting as well as an urge to compensate by providing comfort herself. ML
uses the personal pronoun ‘you’ instead of ‘I’ which allows her to appeal to
the experience of the collective and distance herself from the distressing
recollection. Internal conflict is evident throughout ML’s account.‘Normally if the patient would get upset you would, your
instinct would be to hold their hand or touch them. And you
suddenly were thinking oh I don’t think I can do that or should
I do that. . . It just I guess goes against everything that we
normally do in palliative care’.‘I think on one occasion I felt I had to do something because
it felt cruel not to do anything’.Here ML’s account is striking in the emotive use of the word ‘cruel’ to
express her urge to comfort an upset patient. She also talks about how the
restrictions go ‘against everything that we normally do’, suggesting a
perceived existential threat to the values of palliative care.‘But yeah probably the situations where a patient would start
crying and your instinct would be to. . . or at least move
closer to them but in moving closer it almost feels as if you’re
increasing the risk’.Mary goes to conclude her account but instead flows into the next thought
without making sense of the narrative. Stories are expected to have a
beginning, middle and end but with the pandemic ongoing at the time of the
interview, this absence of resolution is reflected in ML’s account.
Accompanying narratives
ML’s experience of moral distress was echoed by many of the participants
including EY, JR and WL. These accounts allude to a disruption to their role
as palliative care doctors. They express not being able to support patients
in the way they would normally and the difficulty this caused.‘it’s just been more difficult in that it’s part of our
practice to want to sort of support people and communication is
really really important’ – EY‘many families are very understanding and accepting but for
other families what they want is to see their loved one and so
they will continually ask and push and you know try and get
things relaxed for them. So having to police that, where
normally our philosophy is to facilitate as much visiting [as
possible]’ – JR‘it’s very unnatural to keep a distance from people that are
dying in front of you in a hospice. . . it’s against all your
instincts’ – WLMoral distress can be experienced on a spectrum and two further accounts
illustrate the varying effects. As a member of the management team, RW was
involved in deciding how restrictions were adopted. It is interesting to
note how RW detaches himself from the narrative by using the personal
pronoun ‘you’.‘I think staff found that hard and they were always trying
to say well could you make an exception to this case. . . and
the answer was no we couldn’t’ – RW‘So you think you’re not doing the right job or as good a
job as you can do if you’re not letting patients and family get
close to each other’.It is clear that RW feels that the ‘right job’ would be allowing visiting and
while this does resonate with other narratives, he maintains a degree of
objectivity. The influence of EF’s position as a young medical student
should also be considered here as interviews with more senior clinicians
tended to be more formal, possibly due to a difference in age and status.
This could further explain RW’s use of objective language. In contrast to
RW, FJ tended to bend the rules to lessen the impact.‘I kind of decided fairly early on that for a lot of
patients it was actually important to see my mouth, so not
infrequently now, when I go into the room, I will sit a bit
further back, 2 metres back, and take my mask off’ – FJ‘There’s a lot of touching and I think for all of us it’s
hard not to do that, when someone’s dying, to give them that
soothing touch, and again, I sometimes just do’ – FJRW and FJ do not express as much emotion in response to the moral distress as
some of the other participants; for RW, this was likely due to his role in
decision-making while for FJ this was due to her willingness to bend the
rules.
De-humanising and humanising care
At its heart, palliative care is about the relief of suffering; interacting and
forming a connection with patients and their relatives is integral to providing
the best care. Participants reflected on the difficulty communicating within the
constraints of PPE and physical distancing; this not only represented a
challenge in doing their job but at a more fundamental level it signified a loss
of humanity in their interactions, as highlighted in SF’s story.
SF’s story
SF is a palliative care doctor and researcher who was transferred to
full-time inpatient work at the start of the pandemic. She starts by talking
about her personal reaction to PPE changes. The initial shock of adapting to
the situation is evident.‘I remember having a meeting on the first day that we were
to wear masks on the ward and to everybody at the time it was
like what! Why are we doing this, it seems ridiculous. . . there
was a period where we were wearing the masks and visors on top
of the masks. It was very space-age!’SF’s reference to ‘space-age’ suggests the PPE requirements were almost
incomprehensibly unusual and distinctly detached from her experience in
palliative care thus far. Having to cover her mouth had a significant impact
on SF’s ability to use non-verbal communication to connect with
patients.‘It changes it a lot because a lot of the communication when
you’re doing clerk-ins and that kinda stuff is non-verbal
communication. You know, you smile at people, you use your face
to communicate with people and I think a lot of the time with
masks that communication sort of isn’t there’‘an important thing is people seeing what you look like. I
know that sounds really silly but, you know, that human element
really was sort of taken away’.The PPE also prevented patients and relatives from seeing what SF looked like
which, as she alludes to, is an infringement on our instinctive human desire
to connect with others. SF wanted people to see that she was trying to
connect with them and showed a desire to be perceived as an individual.‘I think it’s difficult to form a first impression of
somebody when you walk in with all that stuff on so people
couldn’t really see your face, see that you were trying to
communicate with them’.She demonstrated a positive attitude in adapting to the restrictions,
emphasising other non-verbal signals and using humour to humanise the
interaction.‘Trying to use other bits of your face to express. . . like
eyes, that kind of stuff, trying to emphasise to people that you
are. . . there was some expression there’.‘I always just tried to make a joke about it. I said I’m
sure this is not how you’re usually used to seeing
doctors’The restrictions necessitated more active effort to maintain an individual
connection and build a rapport with the patients. Physical distancing was
also a significant change for SF.‘The first thing of really any palliative care doctor or
palliative care nurse is to sort of go to the patient a lot of
the time. And I suffer from it badly in that I go, I always go
and put my hand on somebody’s hand . . . so that was an
adaption’In saying ‘I suffer from it badly’, SF is recognising that connecting through
communicative touch is a vital part of her identity as a palliative care
doctor with the verb ‘suffer’ acknowledging the negative connotations now
associated with physical proximity.‘I think actually people have got very used to wearing masks
it’s sort of normal now whereas at the start it felt very very
strange wearing them round the wards. So, I think yeah it’s
become more normal and social distancing has become more normal
as well’.SF concludes by circling back and describing how normalised mask wearing has
become. SF’s experience demonstrates a subtle dehumanisation of interaction
and a striving to maintain humanity through alternative means of
communication.Several participants echoed SF’s sentiments on physical distancing and PPE
being a barrier to connecting on a human level. WL, AV and FJ touch on the
loss of individuality and a formalisation of interaction which detracts from
the human element of care.‘it suddenly felt very formalised, you know, having to stand
2 metres away, I think that was the most tricky part of it, at
the beginning’ – WL‘It just made it less personal. . . less personal and I
guess less effective because you’re unable to be physically
close to people’ – AV‘sometimes they just need that bit of human touch’ –
FJ‘it’s that much harder when you can’t see someone’s, the
whole of someone’s face, to really have this. . . to connect’ –
JRJR expresses a similar notion that in seeing someone’s face you are able to
connect, suggesting that when faces are visible there is a deeper level of
understanding between doctor and patient and a humanity to the
interaction.‘where before there was that real life to the hospice with
relatives free to come and go, we had shared spaces, the day
room, where relatives, patients, could sit, could share time
together, so just I think atomized, you know it really felt like
everyone was atomized’ – JRThe feeling of being ‘atomised’ implicitly identifies togetherness as central
to the human experience. Likewise, individuality can be seen as a
representation of humanity which ML alludes to when she talks about wearing
scrubs. ML describes an increasing homogeneity perceived by the patient.‘I remember one patient saying ‘you all look the same’. Now
I’m not sure that’s totally true but I think for patients they
were just seeing a series of people, particularly once we
started wearing scrubs as well, just scrubs and a mask’. –
MLRW talks about adapting to the changes by using alternative communication
strategies.‘I remember somebody talking about ‘smeyesing’, cause it’s
like smiling with your eyes. And hopefully, people see that a
little bit’Though perhaps unconsciously, many participants described elements of
humanity in healthcare that had been taken away as well as their adaptations
to overcome this and maintain a connection with patients.
Morale and mental wellbeing
The effect of moral distress in addition to the wider consequences of working
during the pandemic had varying effects on participants, with some able to cope
while others struggled. WL experienced both coping and struggling during the
pandemic.
WL’s story
WL is a palliative care doctor who spent the first part of the pandemic
working in a hospice before moving to a hospital palliative care team. WL’s
account suggests that at the start of the pandemic, the changes were
manageable owing to a solidarity amongst staff.‘I think that at the beginning, the sense of camaraderie was
quite strong, I think that helped people get through it because
we were all vulnerable to it, we were all in the same
situation’His use of the word ‘vulnerable’ alludes to a level of instability triggered
by the pandemic which exposed people to a greater risk of harm. WL is very
open about the impact on staff morale throughout his account.‘There were changes that sort of impacted on staff wellbeing
after a time. . . things that you probably at first couldn’t
realise that were affecting you’A major cause of declining morale was continuing moral distress.‘it’s very unnatural to keep a distance from people that are
dying in front of you in a hospice, it’s against all your
instincts. . . having to maintain a 2 metre distance from
patients that were distressed. . . not being able to sit and, I
know it’s a cliché, but hold their hand, you know, have that,
that sort of physical contact was very challenging for
staff’.WL’s impassioned description of the distancing going ‘against all your
instincts’ gets to the core of the internal conflict that arises when
healthcare professionals are unable to take the morally right action. As
time went on and the second surge of COVID-19 cases hit, WL found it harder
to cope.‘The second time round, this time feels harder, and I think
it’s because everyone’s more worn down, you know, publicly and
professionally with the restrictions’.‘it’s a bit of a scenario where you got through the first
wave on, on your adrenaline almost, or you know sort of
heightened level of tension, and then we all relaxed a little
bit, and it was hard to put the foot on the gas again’The second wave is a turning point in WL’s narrative, representing a shift
from coping to struggling. He goes on to resolve the account by explaining
how he dealt with these challenges and providing a positive outlook as he
seeks a source of hope from his experience.‘I’ve taken the opportunity to try and, um, get some more
clinical supervision, which is the sort of psychological support
which isn’t routinely offered to medical staff’‘the sort of culture that has come from it in terms of
people being able to talk about their mental health and their
resilience and things like that, their wellness being more of a
focus. . . is a positive thing’WL’s sincere account of coping and fatigue outlines the impact of the
pandemic on staff wellbeing.Numerous participants referenced the feeling of camaraderie and cited this as
a motivating influence in the first wave.‘I enjoyed the camaraderie’‘we were all in it together so there was that sense of
camaraderie initially’ – ML‘everybody was around, we were all kind of in it together a
bit initially’As the pandemic progressed, participants differed in their responses and
ability to cope. For some, like WL, the camaraderie was outweighed by a
feeling of fatigue.‘I’m just tired to be honest. . . and I think everyone is. I
think somebody spoke to me recently about this sort of 6-month
wall in any sort of difficult situation and I think we’ve sort
of hit that recently’‘with the second wave wherever you’ve been working that
sense of teamwork and camaraderie, it’s not that it’s not there
I think it’s just everyone’s having to work a lot harder to try
and maintain it’. – MLFor others their narratives illustrated a more stable endpoint to the
continuing challenges.‘we’re all just resigned to this is the way it’s gonna be
for the foreseeable future. . . and making the best of it
really’. – EY‘that was what kept me going during lockdown was the times
where we would sort of collect, re-group and just go for a cup
of tea downstairs and speak to each other. That’s. . . that was
the thing that kept us all sane’. – SFOne participant expressed positive sentiments about how she had coped during
the pandemic.‘I feel very lucky, just where I am in my life at the
minute. Lockdown, the restrictions, they’ve had some impact. . .
but life in some ways doesn’t feel very much different. . . it
hasn’t had the impact on me personally that is has on a lot of
people’ – JR‘home schooling was a nice opportunity for us. And yeah I
guess the challenges at work have been interesting’ –
JRJR’s account is a noticeable contrast to WL’s and while she did describe
moral distress to an extent, as discussed earlier, her self-reflection
maintains a strong impression of coping. Through these narratives, we can
perceive an initial collective experience of camaraderie before individual
differences in adapting and coping became apparent.
Discussion
Palliative care doctors faced unique and complex challenges throughout the
pandemic, both professionally and personally. Throughout the interviews, the
notion of moral distress was pervasive. Jameton
first described moral distress as being unable to take the action that
one believes to be morally right due to institutional constraints. It has
historically been considered within the context of nursing but is increasingly
recognised as a widespread phenomenon affecting healthcare professionals, social
workers and administrative staff worldwide.[22
–24] During the COVID-19
pandemic, existing challenges were magnified while new constraints were imposed
leading to increased levels of moral distress.[4,8,25] This study found that the
limited visitation policy, PPE and physical distancing restrictions had a large
impact on staff. Facial recognition and lip-reading are important for
interpersonal reassurance in distressed patients and the presence of family and
friends is well-known to benefit patients with delirium and dementia.
Restrictions therefore increased patient distress, which in turn led to
moral distress in palliative care doctors as they felt they were not always
doing the right thing. The moral distress doctors described had varying effects
but at its worst, caused feelings of guilt and ineffectiveness, which supports
previous research into the effects of moral distress.[8,22] Experiencing moral
distress can lead to what is termed moral residue, the lingering emotional wound
that can result,[27,28] or moral injury which has been defined as the profound
psychological distress that follows when a person’s moral or ethical code is
violated by actions, or lack of actions, taken.
The potential for moral injury is evident in the doctors’ accounts and
may have profound consequences on their professional and personal well-being.
Furthermore, the ongoing nature of the pandemic involved repeated waves of
infections and associated tightening and easing of various societal restrictions
as well as related fears and vigilance necessary in clinical settings.
Accordingly, ongoing moral distress risks moral residue building up in a
crescendo-like manner ever depleting the capacity to cope and adjust, deepening
emotional wounds and increasing the risk of professional burnout.A subtle loss of humanity in interactions contributed to the experience of moral
distress. A number of participants referenced the loss of something ‘human’ but
struggled to explain what exactly ‘human-ness’ is. Todres et al.
proposed eight core dimensions of humanisation in healthcare, two of
which are pertinent here: uniqueness and togetherness. Each of these values can
be imagined on a continuum, for example, from homogeneity to uniqueness. The
loss of tacit non-verbal cues like smiling and hand-holding could be viewed as a
shift from togetherness to isolation. This is supported by Williams and Irurita
who identified that patients felt devalued by behaviours such as standing
at the end of the bed and lack of touch. Similarly, wearing scrubs and facemasks
contributes to homogeneity providing less scope for individuality in
interactions and thus humanisation. Mitchinson et al.
described similar notions of reduced human connection arising in their
interviews with palliative care doctors during the pandemic. Adjustments to
compensate such as making jokes and emphasising expression are key to
rehumanising interactions and maintaining a personal connection with
patients.[5,7]Morale shifted for these doctors throughout the pandemic due to continuing moral
distress, difficulty communicating with patients and numerous other personal and
professional challenges. There were generally positive feelings of camaraderie
at the beginning of the pandemic that mitigated the negative outcomes in the
face of increasing vulnerability to stresses. However, as time went on, the
effects of the continuing challenges were evident. There was a large spectrum of
coping, with some participants remaining relatively unaffected while others were
undoubtedly struggling. Previous studies have noted decreasing morale, adverse
mental health consequences, and individual differences in coping in healthcare
staff globally during the pandemic,[3,33,34] indicating these findings
are not unique to palliative care in Scotland. Vulnerability is an important
point here and is considered part of the human condition, yet as Kottow
argues may be better replaced with the term susceptibility. Doing so
deflects the onus away from the individual towards the conditions that societal
structures engender, in this situation the working environment and culture
within medicine. Thus, capacity for ongoing coping can be tackled at
institutional as well as personal levels.
Going forward
Measures to mitigate moral distress should be implemented at a personal and
institutional level. Our findings suggest that doctors should be supported to
connect with patients at a human level with adaptations involving safely showing
their face prior to donning PPE, smiling with their eyes and using hand
gestures. Marler and Ditton
propose further adaptions including communicating non-verbal information
verbally (e.g. saying ‘I’m smiling back at you’), clearly introducing yourself,
and minimising distractions. At an institutional level, measures such as
transparent facemasks, continued clear communication between staff and providing
information on where to seek support should be encouraged. The very real
potential for moral residue and injury should also be considered with the need
to support doctors both professionally and personally in the aftermath of these
exceptional circumstances.
Strengths and limitations
This research provides a novel exploration of moral distress amongst palliative
care doctors during the pandemic. Due to the small sample size and limited
number of hospices involved, there is reduced applicability to other contexts.
Only doctors working in Scotland were included in the study meaning the wider
understanding of moral distress across different settings and cultures could not
be explored. It is worth noting, however that the small sample size allowed for
more in-depth analysis and, due to the focussed topic, a degree of saturation
arose. As discussed throughout, the co-creation of narrative is unavoidable and
participant responses and data analysis were likely influenced by EF’s position
as a young female medical student.
In particular, as someone who has had to adapt to some of the same
changes (e.g. having to communicate with patients in a mask), EF likely had
preconceived views about how this would impact care.
Conclusions
This study explored the experiences of palliative care doctors working amid
restrictions during the COVID-19 pandemic in Scotland and adds to the growing body
of literature surrounding healthcare workers’ experiences of the pandemic. Future
research could explore moral distress in palliative care settings internationally
with a view to compare the factors affecting how moral distress was experienced by
healthcare professionals during the pandemic and stimulate thinking on how best to
address it.Click here for additional data file.Supplemental material, sj-pdf-1-pmj-10.1177_02692163221088930 for Moral distress
amongst palliative care doctors working during the COVID-19 pandemic: A
narrative-focussed interview study by Ellis C. Fish and Anna Lloyd in Palliative
Medicine
Authors: Andy Bradshaw; Lesley Dunleavy; Ian Garner; Nancy Preston; Sabrina Bajwah; Rachel Cripps; Lorna K Fraser; Matthew Maddocks; Mevhibe Hocaoglu; Fliss Em Murtagh; Adejoke O Oluyase; Katherine E Sleeman; Irene J Higginson; Catherine Walshe Journal: J R Soc Med Date: 2022-02-08 Impact factor: 18.000