The International Journal of Psychosocial Rehabilitation

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

Brisbane Office:
Postal Address:
PO Box 1307
Kenmore Qld 4069
Tel: (07) 3374  1792
Fax: (07) 3374 1792

Vivian Jarrett
Doctoral Candidate
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
  International Journal of Psychosocial 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, Australia.  

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.  

The research
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.

Sample population
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) specified patients.

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 identified.

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 to mental illness.   
•    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 debilitating illness

Implications of mental illness stigma for end-of-life care
The outcome is that staff find it difficult to access appropriate end-of-life services,
•    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 here.

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 back.

At best the refusal is accompanied by helpful offers of alternative assistance.

•    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 care.
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 back.

In some cases this issue is based on a legal requirement necessitating custodial care.
•    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 separate it.

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 periodically available.
•    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 be needed.
•    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 reassurance.

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 institution.
  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 individuals to experience a "good death".


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