The Problem of Stigma
during End-of-life Care at a Psychiatric Institution
Dr Pam McGrath, B.Soc.Wk.,
MA., Ph D
NH&MRC Senior Research Fellow
International Program of Psycho-Social Health Research (IPP-SHR)
Central Queensland University
PO Box 1307
Kenmore Qld 4069
Tel: (07) 3374 1792
Fax: (07) 3374 1792
School of Psychology
Griffith University - Mt Gravatt Campus
Phone: (07) 3735 3387 (Rm 4.07)
Fax: (07) 3735 3388
McGrath P & Jarrett V (2007). The Problem of Stigma
during End-of-life Care at a Psychiatric
Institution International Journal
Rehabilitation. 11 (2), 19-30
The literature on palliative
care for individuals with a mental illness is scant and there is a
complete absence of work available on the issue of stigma at this
interface. The following discussion makes a start to addressing this
important topic by presenting findings on the nature and impact of the
stigma associated with mental illness from a qualitative research
project on end-of-life care for patients in a mental health institution
called The Park, Centre for Mental Health, located in Brisbane,
Queensland, Australia. The findings reported in this article
affirm the difficulties associated with the stigma of mental illness
and point to the obstacles created for psychiatric staff in accessing
the services of mainstream palliative care.
Keywords: Stigma; Mental Health;
Palliative Care; Attitudes; Service Delivery.
The Problem of Stigma during
End-of-life Care at a Psychiatric Institution.
Stigma is associated with a wide variety of groups including those that
experience mental illness (Link, Phelan, Bresnahan, Stueve, &
Pescosolido, 1999; McGrath & Jarrett, 2004; Schneider, 2004), the
dying (Epley & McCaghy, 1978), those imprisoned (Aday, 2005 -2006),
the aged (Wade, 2001), those with illnesses like AIDs (Buseh, Kelber,
Hewitt, Stevens, & Park, 2006) and disabilities (al., 2005).
Individuals with a terminal illness in psychiatric facilities can have
multiple stigmatised social identities as they are not only considered
mentally ill, but are often imprisoned, aged, and have other illnesses
or disabilities apart from the fact that they are also dying. The
impact of multiple stigmatising social identities may affect not only
the institutionalised individual with a mental illness seeking
end-of-life care but also the service providers who care for them.
However, to date, there is an absence of literature on the topic of
stigma and terminal illness in relation to individuals who are
inpatients of psychiatric institutions. Indeed, the literature on
palliative care and mental illness is scant (McGrath & Forrester
2006; McGrath and Holewa 2004) and there is a complete absence of work
available on the issue of stigma at this interface. As Baker
notes (2005) those individuals facing the final stages of their life in
psychiatric facilities have to date not been studied.
The silence within the palliative care literature over this issue
pre-empts questions around whether individuals who suffer from the
stigma of mental illness are marginalised and discriminated against in
relation to mainstream palliative care service provision.
The following discussion makes a start to addressing this important
topic by presenting findings on the nature and impact of the stigma
associated with mental illness from a qualitative research project on
end-of-life care for patients in a mental health institution called The
Park, Centre for Mental Health, located in Brisbane, Queensland,
The park, centre for mental health
Situated in the Brisbane suburb of Wacol, The Park, Centre for Mental
Health (TPCMH) provides mental health and psychiatric services to the
people of Queensland and was one of the largest psychiatric facilities
in Australia (Finnane 2002). Established in 1865, TPCMH has
recently decentralized its extended care services as provisioned by the
Ten Year Mental Health Plan for Queensland (The Park 2006)
through adopting a paradigm focused towards rehabilitation and
recovery. Currently, TPCMH provides five clinical and rehabilitation
services programs to 192 clients from central and southern Queensland,
including, Extended Treatment and Rehabilitation, Dual Diagnosis
services, Extended Secure Services, High Security/ Forensic Care
Services and Adolescent Rehabilitation Services. Support Services
available at TPCMH include General Health Services, School of Mental
Health and Library, Centre Management and Research Services.
Mindful of the lack of research on palliative care in a mental health
setting, the principal aim of the research project was to document the
experience of providing end-of-life care to patients for health care
workers in an institutional mental health setting at TPCMH. The
work was carried out by a Central Queensland University post-doctoral
research fellow with a background in palliative care research and
infrastructure links to TPCMH.
Ethical consent to conduct the study was obtained from the West Moreton
Health Service District Human Research Ethics Committee.
Participants were verbally informed of their rights in research and
written consent was obtained for participation in the research.
The theoretical framework for the research is situated in descriptive
phenomenology, defined by Spiegelberg (1975) as “direct
exploration, analysis, and description of particular phenomena, as free
as possible from unexamined presuppositions, aiming at maximum
intuitive presentation”. The phenomenon in this case is the experience
of providing terminal care for patients with a physical illness in an
institutional mental health setting. Descriptive phenomenology is
particularly appropriate where little is known about a group of people
(Krathwohl 1993; Polit & Hungler 1995) and so is well suited to the
study of palliative care in a mental health facility where there is no
previous research literature. The experience of providing terminal care
is documented through qualitative research using open-ended interviews
conducted with health care workers at TPCMH by a post-doctoral fellow
experienced in palliative care research.
The two qualitative strategies of purposive sampling and snowballing
enrolments guided the selection of participants. Because of the legal
issues associated with end-of-life care, research discussions with
regards to any death at The Park is highly sensitive, or taboo in the
case of a death presently under coronary inquiry. For this reason
participants had to be purposively sampled through those directly
involved in the care of two patients who had died in the last year but
who were no longer under legal consideration in relation to
either police or coronary inquiry. Those involved in these two deaths
were enrolled by snowballing techniques of targeting key people
involved in the care of those patients and asking those participants of
others who they would consider should be interview because of their
significant role during the dying trajectory. The result was
eight (n=8) interviews which covered a sample representing key people
involved in the care during the dying trajectory of the two (n=2)
It is important to note that although a sample of eight is small, it is
considered substantial in terms of the qualitative literature. The
small number is directly related to the fact that there have been few
recent deaths at The Park and so the overall target population is small
and further reduced by the fact that only those deaths not under legal
consideration can be targeted. In view of such restrictions and the
seminal nature of the work being undertaken, it was considered
satisfying to be able to obtain a sample of eight. As there is no other
work completed on palliative care and mental health, these interviews
provide a unique opportunity to begin to place important end-of-life
issues on the agenda.
Because of the sensitive nature of the topic under investigation and
the fact that the interviews were completed in a closed institutional
setting, extra precautions needed to be taken and promised to
participants during informed consent procedures. Such procedures
were important in order to build a sufficiently safe environment where
the interviewees could participate with confidence. Thus, it is an
ethical imperative that the information provided for demographics will
need to be provided in generalities so that participants cannot be
There were eight (n=8) participants with both males and females
interviewed. All of the participants had worked at The Park for a
number of years, and some of the participants had very long work
history at the institution, so all were well placed to understand the
fullness of the issues in relation to their work place. The
participants were involved in nursing, care co-ordination, education
and advocacy roles at the institution and were directly involved in the
care of the two patients who had died within the last year and were no
longer under coronary inquiry.
Data collection and analysis
The time and location of the interviews were of the participants
choosing. The interviews lasted for approximately one hour, and
the interviews were conducted in interviewing rooms in the hospital.
Participants were encouraged to tell their experience with caring for a
terminally ill patient with the initial question of “Could you tell me
in your own words and in your own way of your experience as a health
professional caring for a patient in a mental health facility with a
terminal illness?” Of particular interest was an exploration of factors
that the participant believed either facilitated or hindered the
provision of optimal end-of-life care. The momentum of the interviews
was maintained by the descriptive phenomenological method of
‘imaginative listening’(Colaizzi 1978). The challenge in
descriptive phenomenology is for the researcher to follow the ideas of
participants rather than impose preformed assumptions on data
collection (Holloway 1997).
The interviews were audio-recorded and transcribed verbatim. The
language texts were then entered into the NUD*IST (Nonnumerical
Unstructured Data Indexing Searching and Theorizing) computer program,
computer software available to facilitate cutting and pasting interview
transcripts into codes (Mays & Pope 1995), and analysed
thematically. As descriptive phenomenology is an inductive
process which seeks to record experiences from the viewpoint of the
individual who had them without imposing a conceptual framework, the
thematic analysis was driven entirely by the participants’ insights
(Polit & Hungler 1995). The coder read all of the
transcripts, then created codes from every statement made by the
participants. The title of each code was usually from the exact
words of the participant. As Grbich (1999) explains, such coding
practices use minimal underpinnings to avoid data being forced into
predetermined frames and to encourage uncontaminated themes to emerge
from the data. There were thirty five (n=35) free nodes created. Once
all of the participants' comments were coded into free nodes, the list
of nodes were then organised under thematic headings. Only the data
relevant to the issue of stigma are presented in this manuscript.
Further findings from the study on ethico-legal issues (McGrath &
Forrester 2006) and the compatibility between the perspectives of
mental health and palliative care professionals (McGrath & Holewa
2004) are published elsewhere.
The following findings need to be set in the context of further data
from the study that indicates that the provision of palliative care in
a mental health institution is challenging at best because of a range
of problems including lack of staff knowledge of palliative
care, limited resource, legal restraints, and problems interfacing with
palliative care services. The findings presented here focus on
one of the central problems impacting on end-of-life care: that of the
stigma attached to mental health patients.
The Mental Health Stigma
Palliative care services for their clients is the stigma attached
• There is nothing you can do about the stigma.
Nothing you can do about it. It would be lovely if there was something
but there isn’t.
The stigma is reported to be attached not only to mental health
patients but also the health professionals who care for them.
• I suppose the stigma is still attached to ‘psych’
nursing isn’t it. All mental health.
The stigma for both the patient and the health professional is
described as unfounded.
• I can understand if they are aggressive, on the
whole they are not usually.
A Caveat: the stigma works both ways
Although the findings indicate that there is a definitive stigma about
mental health patients by palliative care staff, it also needs to be
noted that some of the mental health professionals made statements that
were indicative of a stigma towards palliative care.
• I believe a lot of staff would be very comfortable
with knowing what palliative care means but also a lot of staff would
be quite resisting to the idea on the ward.
The important point is that issues of stigma are not one way:
lack of familiarity with and knowledge about the work of other
disciplines can create barriers of stigma that provide obstacles for
patient care. The findings point to the importance of avoiding
simplistic dichotomies of ‘them’ and ‘us’.
However, as published elsewhere, in many cases the psychiatric staff
shared similar ideas of philosophy and practice to palliative care
specialists (McGrath & Holewa, 2004) and saw the involvement of
palliative care as the preferred option.
• I would have thought that towards the end probably
the most appropriate thing in some instances is for that individual to
go in an in-patient palliative care in a hospice setting where experts
who deal with it every day of their lives and know how to do it.
Suggested causes for the mental illness stigma
The reason for the stigma is seen to be generated by a number of
inter-related factors including fear,
• It is fear. Is the person going to be dangerous to
her own life?
• They look at us and say ‘Well we can’t handle these
people no way. We don’t want anything to do with them’ … they don’t
understand enough about it.
Lack of experience with dealing with mental illness.
• I think the stigma comes from fear and that people
haven’t been confronted by them enough. And maybe they should come and
do a day here.
The alienating nature of many difficult mental illness behaviours,
• He had done things in the past which had alienated
him from a lot of people which is so typical of people with a mental
illness. Through no fault of their own they become alienated from
society a bit like alcoholics
The sense of estrangement associated with different world views,
• They have been ill for so long that their
experience of the world is not like ours
And, the inability to see the person behind the illness.
• It suddenly dawned on me ‘this man had a life
before he got unwell’, whereas so many people just see the incredibly
Implications of mental illness stigma for end-of-life care
The outcome is that staff find it difficult to access appropriate
• People with mental illnesses are not welcome with
at the General Hospital.
At times the refusal by mainstream services to care is complete and
final, for example,
• . . . there is no way he will come here and die
At times it comes after a trial period.
• I rang them and they said we will give it a go, and
then they took him a few days and said, no we are going to send him
At best the refusal is accompanied by helpful offers of alternative
• Anyway a social worker at palliative care did some
remarkable work and found a place for him at a nursing home.
The lack of availability of services was seen as confounded for this
group of patients by the fact that they were involved in institutional,
rather than community based, care.
• I can’t see why we aren’t entitled to the same
service as a community. We are a community care unit or are we? We are
an extended treatment and rehabilitation unit. We are funded by the
government. See I don’t know really what our status is. But we are
certainly not entitled to that service.
Thus, participants indicated that institutionalised mental health
patients are not provided with equal rights to appropriate end-of-life
Positive experiences: Finding ways around the stigma
The participants also spoke about the positive experiences they had
with some service providers who did find ways of overcoming the
resistance to care caused by the stigma.
Trained health professional accompanying the patient
One solution was for the institutional facility to provide trained
mental health staff as full time support at the hospital or palliative
care facility to care for the individual mental health patient.
• They were saying we are not equipped to deal with
disturbed people. And I said we are happy to leave our staff here 24/7
and they said okay.
Bringing palliative care expertise in to the psychiatric facility
Another solution was to organise for sympathetic palliative care
providers to visit the institutional psychiatric facility. The role of
the palliative care providers in this case was to provide professional
advice and support.
• Once the palliative care people would come out
every couple of weeks and people would interrogate them - What do we
do? How do we do...?
The arrangement for palliative care staff to visit, rather than send
the patients to the palliative care facilities, is reported as the best
option because the patients needed the familiarity of remaining in
institutional care. It was noted that individuals in institutional
psychiatric care depend on a familiar environment in order to have some
control over their, at times, difficult behaviour.
• They got sent back because in a totally strange
environment they become more difficult to manage so they send them
In some cases this issue is based on a legal requirement necessitating
• From medium and high security it would not be
possible to send them off.
For others, it was because they had been in psychiatric care for so
long they were institutionalised and required the comfort of repetitive
familiarity, for example.
• Because some of them have been here a long time so
they are institutionalised. Could you imagine being here for maybe 16
years how hard it is to be out there in the big world? Could be a cruel
world for them sometime. Here they are safe, they got their friends,
the get everything provided for them, there is no fear like there is
out in the community.
But mostly, it was noted that patients in the psychiatric facility came
to rely on the familiar relationships with the staff of the facility.
• He would not let a lot of them do things for him. …
he liked people that he knew as well.
As one participant summed up, this is a particularly poignant issue
during end-of-life care.
• People can’t help themselves. If they find
themselves in an unfamiliar environment they would be phobic or more
psychotic. Because they just do not want to be there. So this is
another issue which has to be definitely pointed out. Shift these
people somewhere else and that is how they operate. The mental health
issues are also part of palliative care. It is not like you can
The issue was not just about familiarity, but also about training. It
was noted that people with a severe mental illness require the care of
trained mental health professionals.
• We have the expertise to deal with their mental
illness which is an overriding factor when they are physically ill.
Training and knowledge in dealing with disruptive behaviour is noted as
particularly important with individuals who are likely to be violent.
Ad hoc nature of solutions. However, the important point was made
that in the cases where ongoing
support was provided by mainstream services it was usually after a
period of expressed desperation and usually because of the sympathetic
response of an individual health professional. The significant point is
that there is not an automatic system response; rather, end-of-life
care for mental health patients in an institutional facility is ad hoc.
It depends on finding a sympathetic person in mainstream services who
is prepared to go out of their way to help.
• Palliative care said we will not accept this man
until he is on death’s door. And he could live for another three
months. In the end it was only that I spoke to someone who was just
really tuned in I think and I said, you got to help us. With this we
are struggling here. And she said okay. Your connection with most
services is not the service it is the person.
The limited nature of even the positive assistance
In most cases the assistance was only advisory rather than hands-on
practical help. Although such advice was appreciated, it was only
• They were very supportive in that respect but they
weren’t here all the time.
Also, advice over the telephone, although helpful, is seen as less
valuable than service delivery assistance.
• The other one is the lack of close palliative care
support. I mean nobody would look at once a fortnight. They were always
available on the phone if you wanted to talk to them, but that is not
really the same. Somebody that knows exactly what is supposed to be
being done and then you didn’t have anyone available to do it.
The difficulties associated with end-of-life care were seen as very
challenging and so more ongoing reassurance and support was reported to
• The consultations and reassurance: yes you are
doing it right or this is the way to do it. We could have used more
consultation in that department (pain management). I suppose more
Mental health staff stress in caring for dying patients
As the health professionals at the psychiatric facility were not
trained in palliative care and had limited resources and support in
dealing with dying patients, caring for terminally ill patients is
described as highly stressful. As can be seen by the following
examples, participants used words such as ‘hard’, ‘traumatising’,
‘angst’, and ‘stress’ to describe the experience.
• It is incredibly traumatising for the people who
have to do it. I am certainly aware of the angst in the staff. You
could see the stress. You could feel the stress.
For some, the distress was exacerbated by issues of loss associated
with the strong relationships that develop with long term patients.
Bureaucratic difficulties and lack of resources added to the stress.
• It was stressing watching him without having the
facilities to give him, what we needed to give him.
Although research is available on the negative sequelae of the stigma
attached to mental illness, there is no work on this topic in relation
to end-of-life care for patients in a psychiatric institution. Indeed,
although over the last decade there is has become increasing interest
in palliative care, as yet caring for the seriously mentally ill dying
population is an area within this field consistently overlooked (Baker
2005; Chochinov 2004). The findings reported in this article affirm the
difficulties associated with the stigma of mental illness and point to
the obstacles created for psychiatric staff in accessing the services
of mainstream palliative care. Corrigan and Penn (1997), also
support the idea that services provide a source of discrimination for
those with mental illness. Figure 1 outlines the factors posited by the
present study that contribute to stigma and thwart access to
appropriate palliative care for in-patients in a mental health
Figure 1 - Factors
contributing to stigma for in-patients of a psychiatric facility
The findings resonate with Allport’s (1954) account of stigma where
decisions are made based on the negative stereotype without knowing
about the individual. Link and associates (Link, Cullen, Frank, &
Wozniak, 1987) affirm the findings that the difficulties surrounding
end-of-life care for those with mental illness are increased because of
the fear of dangerousness that is associated with the negative
stereotype of being mentally ill. Phelan’s research
(cited in Link 1999) similarly highlight the fear associated with
beliefs that mentally ill people are dangerous. This fear has
been shown to be unfounded (cited in Link, 1999).
Studies over the last decade in Australia (Highet, Hickie, &
Davenport, 2002) and New Zealand (Green, McCormick, Walkery, &
Taylor, 1987) have found that stigma is still a problem and that
despite many campaigns to improve community awareness, that there is
still misunderstanding of mental illness. The findings from the
present study indicate that the strong negative sequela of the mental
illness stigma is the obstacle to accessing mainstream palliative care
services for the patients of the psychiatric institution. The evidence
points to the fact that the links between the mental health and
palliative care system are not yet established. The outcome is that
access is ad hoc, rather than automatic or systematic. The situation is
serious in view of the profound needs of this group of dying patients
as stigma is likely to be greatest for those who are most vulnerable
with chronic and incapacitating mental illness (Corrigan & Penn,
2004, Link, 1987), and it is also likely that this stigmatized group
will suffer more from physical illnesses (Farnam, Zipple, Typrrell,
& Chittinanda, 1999).
A caveat to the discussion is that in end-of-life care, the stigma can
work both ways with psychiatric staff recording a stigma in relation to
the discipline of palliative care. Most of the participants
interviewed, however, did have a positive orientation to palliative
care and sought such best practice terminal care for their patients.
The link to the palliative system relies on the good will of individual
professionals acting singularly within mainstream care, and usually
after the display of severe signs of exasperation by mental health
professionals. Alternative strategies used to foster liaison between
psychiatric and palliative care recorded include the provision of
mental health staff to accompany psychiatric patients to mainstream
facilities or the involvement of palliative care staff in an advisory
capacity in the psychiatric institution. Predominantly, however, where
help is offered it is usually advisory rather than hands on service
provision and is periodic and limited. The outcome is a high
level of stress recorded by mental health professionals during times of
end-of-life care. This is exacerbated for those with long term
relationships with dying patients. Lack of knowledge, insufficient
resources and bureaucratic difficulties compound the distress.
Previous findings published from the project (McGrath & Holewa,
2004) point to the great similarities between the palliative and mental
health philosophies and practices, demonstrating that both share a
patient-centered and holistic focus. The clear indication from
the present findings is that there is a strong need to start to build
the links between these two quite similar, but presently alienated,
systems for the sake of both the patients and the staff who care for
them. As Baker (2005) argues, palliative care provides a unique
opportunity for mental health nurses, particularly the nurse
practitioner in psychiatry, to fill the need of helping this group of
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