The International Journal of Psychosocial Rehabilitation

Mental Health and Palliative Care: Exploring the Ideological Interface

Dr Pam McGrath B.Soc.Wk., MA., Ph D
Research Fellow
Centre for Social Science Research

School of Nursing and Health
Central Queensland University
Rockhampton
Queensland 4702 Australia
Tel: (07) 3374 1206/1792
Email:  pam_mcgrath@bigpond.com


Mr Hamish Holewa, B.Sc., B Ed
Project Officer
The Park, Centre for Mental Health &
Central Queensland University
Email: h.holewa@cqu.edu.au

  Citation:
McGrath, P. & Holewa, H. (2004). Mental Health and Palliative Care: Exploring the
 Ideological Interface.
  International Journal of Psychosocial Rehabilitation. 9, (1) 107-119

Abstract
People with a mental illness have an excess mortality, a reduced life expectancy and die from ten to fifteen years earlier than the general population In the face of such sobering facts about the difficult end-of-life issues in relation to mental illness, there is a ‘loud silence’ in the literature on palliative care and hospice services for individuals in the mental health system.  This paper seeks to address this hiatus by presenting findings 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.  In particular, this discussion will focus on the findings from the project which highlight the similarity in philosophy between palliative care and mental health practice. The similarity which includes a person centred practice, relationship- based connectedness, a belief in compassionate, holistic care, respect for autonomy and choice, quality of life issues, family as the unit of care and need for a democratic and multi- discipline work team , will be described. It will be argued that the common philosophical meeting ground is an excellent foundation for integrating palliative care, now recognised as best-practice end-of-life care, into mental health service delivery. In short, the shared practice values and vision between these two disciplines provide an optimistic starting point from which to plan to address the lack of hospice and palliative care service delivery in mental health.

Keywords: mental health, palliative care, qualitative research.


Introduction
The mental health literature indicates that there are many factors that point to the need for serious consideration of end-of-life issues for psychiatric patients.  Foremost of these concerns is the excess mortality and higher case fatality rate for patients within the mental health system with cancer. By way of example, the West Australian work of Lawrence and associates (1) demonstrates that despite scant differences in overall cancer incidence rates between psychiatric patients and the general community, cancer mortality within the mental health system was 39% higher in males and 24% higher in females. Indeed, the evidence indicates that high rates of medical co- morbidity and premature death are now considered normative health outcomes for individuals with mental illness (2).  Mortality among psychiatric patients not only remains high, but there is evidence that it is increasing (3).  

The second concern is that mortality concerns in mental health are not just associated with traditional palliative care diagnostic categories, but extend to the equally serious incidence of death by suicide (4,5). Studies of psychiatric patients indicate that the highest cause-specific mortality rate is for deaths due to suicide (3). Of considerable worry is the fact that excess mortality risk is concentrated in the first few years after first contact with mental health services (3). In summary, then, statistical information demonstrates that people with a mental illness have an excess mortality, a reduced life expectancy and die from ten to fifteen years earlier than the general population (2,6,7,8).  

In the face of such sobering facts about the difficult end-of-life issues in relation to mental illness, there is a ‘loud silence’ in the literature on palliative care and hospice services for individuals in the mental health system.  The only work that exists is about liaison psychiatry working with patients with stress and depression in mainstream hospice services (9,10).  There is neither research nor commentary on end-of-life services for patients within the mental health system.  Thus, this paper seeks to address this hiatus by presenting findings 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.  In particular, this discussion will focus on the findings from the project which highlight the similarity in philosophy between palliative care and mental health practice. The similarity will be described and it will be argued that the common philosophical meeting ground is an excellent foundation for integrating palliative care, now recognised as best-practice end-of-life care (11,12),  into mental health service delivery. In short, the shared practice values and vision between these two disciplines provide an optimistic starting point from which to plan to address the lack of hospice and palliative care service delivery in mental health.


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 (13).  Established in 1865, TPCMH  has recently decentralized its extended care services as provisioned by the Ten Year Mental Health Plan for Queensland (14) 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.

Methodology
The theoretical framework for the research is situated in descriptive phenomenology, defined by Spiegelberg (15) 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 (16,17) 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 death 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.
Demographics
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’ (18).  The challenge in descriptive phenomenology is for the researcher to follow the ideas of participants rather than impose preformed assumptions on data collection (19).

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 (17,20), 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 (17). 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 (21)  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.

As phenomenological description can never encompass the whole of the phenomenon but shows only particular aspects (19), only the findings from the free nodes directly related to the impact of the legal framework on terminal care service provision are presented here. In relation to the common problem for the qualitative researcher of summarising the sheer volume of data (17), the findings section will follow the usual format of presentation (20) of detailed descriptive commentary accompanied by sequences from the original data (segments of the interview texts). The interpretation of the findings, set in the context of available literature, will follow in the Discussion section.

Findings
Knowledge of palliative care
With the exception of one person who had previously worked in oncology, the participants had little experience with, or knowledge of, palliative care. Thus, when asked about their knowledge of the discipline most responded with an unqualified “No”: they knew very little. The following is typical of such responses,
•    No. What is it called again?

The reasons given for this unfamiliarity were, firstly, to do with the lack of involvement of palliative care at the institution,
•    We (at The Park institution) have had so little to do with palliative care across time

Second, it was noted that, although many were nurses, they did not have practitioner experience in palliative care. For example,
•    I never really understood what that means, never been to a palliative care unit.

However, for some, there was familiarity with the general concept through the mass media or through conversations with others in their intimate circle,
•    Never been to a palliative care ward, just sort read in the papers, friends commented on their relative had to have palliative care

Definitions – Educated guesses
Although the participants indicated they had no formal professional knowledge or experience, they demonstrated an excellent understanding of many of the basic criteria in their educated guesses about the nature of palliative care.  These guesses covered central concepts such as a focus on the individual in the context of their family,
•    And so not just for the individual but for their family members as well, to make sure the best possible outcome.

The priority given to a concern about  quality of life,  
•    Be as comfortable and enjoy, it seems ludicrous to use that word and I am trying to think of a more appropriate word. Why should the last days be your worst days? So quality of life.
•    Making life for a person who is dying as much comfortable as possible

The centrality of the patient-centred notion of choice and autonomy,
•    And that might mean that person is managed at home or in an inpatient facility with services delivered not as assessed by the palliative care team but as the individual would have thought would be the ideal arrangement.

The provision of effective pain management,
•    I would say a respectful way of letting a person be pain free in the end stages of their life.

The provision of psycho-social-spiritual support,
•    The role of palliative care is to ensure that appropriate medical and psychological and spiritual support are brought to bear for that person at that point in time, at that point of need,

An understanding of clinical skill,
•    Palliative care in a hospice setting where experts who deal with it every day know how to do it.

And lastly, an awareness that it involved care of patients during the terminal stage of their disease,
•    I get the impression that it is somewhere you can go for management of your illness or pain relief just general management, overall care; you are not doing any magic cures.
    
Similarity to mental health philosophy and practice
In view of the participants clearly stated lack of knowledge of palliative care practice which rested solely on educated guesses, it is interesting to note that descriptions of the mental health work resonated clearly with the ideology and practice of palliative care. As will be seen by the following descriptions, there is a close affinity between the attitudes, values and practice of mental health and palliative care.

A person-centred practice
As with palliative care, connecting with the person is the central focus in the work of the mental health staff interviewed.  
•    Our whole model of service delivery is about making contact with people.
It was noted that this can be very challenging in practice in a situation where the person’s mental illness can impact strongly on their ability to make relationships. As one participant sums up,
•    Our focus is connecting with that person. Connecting with the person and forgetting the illness.  Connecting with the person and we are trying very hard to do that. And it is not easy.

However, participants pointed to their person-centred mental health training and skill that prepares and assists them in the difficult task of making the connection.
•    We should be skilled people. We are supposed to be able to go to that person and take cues from the person about how they can handle it.

Some of the staff interviewed spoke of their individual strategies for connecting with mentally ill patients.
•    One thing that I’ve been taught in nursing when you are not quite sure what they think is to put yourself in their position and what would you want if you were them.

Descriptions were provided of situations where with training, perseverance and a strong person-centred philosophy, connections were even made with floridly psychotic patients.
•    I try to talk to them and open up something… a lot of people believe that it doesn’t make a difference to patients because they are floridly psychotic.. I don’t believe that... because I have had conversations with totally psychotic persons…

Relationship- based connectedness
As with palliative care practice, the modus operandi for connecting with clients is through the establishment of nurturing relationships. As one participant summed up,
•    On an individual level that connectedness is there, (our work is concerned with) forming relationship with our clients

Similar to palliative care, the relationship is formed through daily interaction attending to patients needs.
•    To talk to them and try to help them with their needs – (if they) need shower, need change of bed, helping them clean their clothes, just to talk to them.

There was evidence of work satisfaction as reward for the energy invested in the relationship-based connection.
•    I am this person who is constantly with them. You hardly see me sitting in the nursing station only if I have to document something. I love to be there even if they are in a psychotic state; I really believe that I can make a difference.

One participant expressed strongly the similarity between mental health and palliative care on this aspect of care,
•     (Pointing to the similarity of palliative care and mental health) because you try to get closer to the patients no matter what. You try to get closer as much as you can. We try to make them comfortable as much as you can. If totally psychotic give medication and just start talking to them. Do you think this will help? I feel that you are not very well today?  Do you want to talk to me about it?  And then try to talk

As the following example demonstrates, where the patient has been in the facility for years many staff will have established significant relationships with them,
•    The memorial service was made for the entire facility. Everyone who knew him. We took photos and posted them.

However, a caveat to the discussion was given by the reference to the fact that some in the institution may not agree with the desire to form nurturing relationships.

•    (Talking about the problem of locked doors and observation through window) A lot of people are not close to patients and they are not in contact with them because they chose to.

Compassionate and Holistic Care
The participants also emphasised that the person-centred mental health philosophy was based on compassionate and humanistic principles of holistic care. The references to humanistic and holistic care were direct, not inferred.
•    Working in mental health we are supposed to be holistic practitioners.
•    It is humanistic

The focus is not restricted to the mental illness, but rather is concerned with the whole person and how best to rehabilitate them from both a psychological and social perspective.
•    You are just trying to rehabilitate them, treat them as best you can. Try to get them back to the community. Or get them back into social life again without crimes or whatever they committed to come in here.

Again, the strong similarity on this point between mental health and general nursing was drawn,
•    It is unfortunate that there is this (difference between) general nursing and psyche nursing because I believe in holistic nursing and I don’t see the big difference.

The point was also made that during the end-of-life trajectory of the patient the mental health staff felt a heightened inclination towards compassionate, humanistic and holistic care.
•    You can be compassionate. I would go there towards the end - I would make more effort to actually go and be with him. And I would open his fridge and pour him drinks which was not kind of what I do because I am away from that area. So I made more of an effort to go and do those humanistic things than I would ordinarily have done.

Because of the psychological orientation of the holistic mental health practice, handling the end-of-life issues of grief was not a difficulty.
•    I think we really do try to do the appropriate thing and of course our thing is psychological. So we knew about the grief issues.

As with palliative care, the holistic motivation involved a desire to make a difference,
•    I just felt that I make a little bit of difference.

Respect for autonomy and choice
Although legal notions of informed consent in mental health are complicated by the concept of cognitive capacity, there is evidence in participants’ statements of a commitment to foster autonomous choice. Such sensitivity to respecting autonomy strengthened the development of trusting relationships.
•    I would never push the issues… if I thought he was uncomfortable you wouldn’t go further. I didn’t push it unless I could help his total consent with that.  We had a very good understanding.  He trusted me completely.

Concern for quality of life as defined by the client
As with palliative care practice, the mental health staff not only posited the importance of quality of life but also emphasised that it must be defined by the patient’s frame of reference.
•    From the subjective viewpoint, quality of life is a term that is totally subjective because your quality of life is different to mine.

Focus on family as unit of care
Although in mental health there are complex obstacles to maintaining family connections (findings on this issue will be published separately), the staff indicated that they valued and in invested energy into affirming the importance of family context.
•    To me it is totally the same - the family issue is most important for these patients as well.
•    When she first arrive the staff were ‘thank God family is here’

Multi-disciplinary team work
A further similarity to palliative care is the participants’ stated belief in the importance of a democratic, multi-disciplinary organisational structure.
•    Team work… flat structure… doctor supported decisions made
•    The whole philosophy is multidisciplinary and the team ... has to do with that structure


Ability to face and deal with dying
As the interview focus was on end-of-life issues, there were many statements to indicate that (as with palliative care professionals) the mental health participants had an ability to accept and work comfortably with the notion of death.
•     (Some people prefer not to be on shift when someone dies) I prefer to be on, (as it provides) closure.

Death with dignity
Accompanying the comfort with death is the priority given to ensuring that patients have the opportunity to die with dignity.
•    I really wanted to make sure he had the  opportunity to die with dignity really important

Concern to keep patient in familiar environment
As will be published elsewhere, the participants indicated that in the mental health setting patients’ contacts with their families were often lost or problematic.  Where the patient had been in the institutional setting for many years the staff become substitute family.  Taking into account this idea of ‘institutional family’, there is extensive evidence in the data to show that, similar to palliative care, the mental health staff prioritised the importance of the patient dying within the comfort of the familiar net work of relationships and in the physical place that had been the individual’s home.
 
•    Most of my colleagues were pleased that he had his last few days with us rather than send him off to hospital for that time.

Special attribute of staff
Although there is a great similarity in the insights of all participants interviewed for this study, there are also indications of difference to other mental health workers on issues of compassion and involvement with patients. Thus, it is important to posit the caveat that the interviewees may mirror a self-selection process that reflects the attitudes of mental health staff prepared to become involved with patients during the dying trajectory. As noted in the Discussion section, a similar self-selection process operates in the discipline of hospice and palliative care.

•    I don’t think we can teach people to be compassionate if it is not in their personality. .. It may even  be a self selection process..

Participants indicated awareness that the foundation for effective work with the dying may be related to personal as much as professional qualities of staff.
•    Not everyone can do it. People have not dealt with their own issues their own mortality and understanding the meaning of life if you have not come to grips with the meaning of life, it is pretty hard to sit down with someone … you probably need dealing with your own feelings

Summary statement
In summary, the similarity between the palliative care and mental health philosophies was noted by the participants.
•    I am not very familiar with the palliative care stuff because I’ve never been there but if the philosophy sounds like that then that would fit in here.

The ideological concern at the core of both disciplines is reflected in one participant’s summary statement,  
•    We were trying our damnedest to do the right thing.

Discussion
The findings strongly indicate a lack of knowledge of, an affinity with, and a need for, palliative care in the mental health setting.  

This group of mental health practitioners directly involved in caring for the terminally ill did not have a professional understanding of palliative care and had not been exposed to education or training on best practice end-of-life care.  However, they were able to make educated guesses about the discipline because of their informal exposure to either the media or familial experiences with dying.  Such guesses addressed core issues documented as central to palliative care including notions of quality of life (22),  family involvement (23), patient-centre care (24), respect for choice and autonomy (25), effective pain management (26), psycho-social-spiritual support (27), the importance of clinical skill (28),  and the focus on palliation rather than cure (29).  

In their discussions of end-of-life care in a mental health institution, the participants articulated many commonalities between the mental health and palliative care philosophies and practice. The first issue of similarity is the idea of person-centred practice. Issues of concern to the client form the starting point for planning interventions within the person-centred approach to health care (30,31). Particularly in relation to recovery, there are now models of care available in mental health, such as The Tidal Model by Barker (32), that emphasis the centrality of an empowering, person-centred approach.

The participants indicated that in mental health connecting with the individual can be challenging and requires skill and training. As noted in the literature, a repertoire of knowledge is essential to the mental health worker as they require highly developed interpersonal skills and strategies for providing help in a way that preserves the dignity and pride of the client (33,34).  As Cleary (35) explains; training, experience and aptitude are necessary to acquire such skills.

The second link of commonality between the disciplines was stated as a focus on a relationship-based connectedness. The relationship between the health professional and the patient is now considered the essence of mental health nursing and the most basic principle taught to mental health nurses (33,36,37).  Similar to palliative care, in mental health the therapeutic essence of relationship building dates back to the origins of the movement. In the case of mental health it is traced to the work of Peplau (38)  who emphasised the importance of interpersonal relationships, with most of the subsequent mental health nursing literature drawing on  Peplau’s conceptualisation (39,40,41,42,43).

The third point of comparison is the belief in compassionate, holistic care. The support for holistic care is strengthening in mental health with many authors warning against reductionist treatments as bound to fail (44). The holistic paradigm emerging in mental health is one concerned with a commitment to care and a dedication to understanding the meaning of illness experience from the patient’s perspective (45,46). As Raingruber (47)  argues, the holistic and egalitarian focus is consistent with the value base of mental health nursing.

The participants’ fifth parallel in practice and ideology is that of respect for autonomy and choice. Engendering respect for a person’s autonomy is recorded as a key aspect of mental health service delivery (48).  As Atikinson (49) explains, fostering autonomy in mental health can be regarded as manifesting respect therapeutically for a client’s own goals and ways of pursuing them. As with palliative care, information giving is seen as a key process in fostering autonomy and choice in mental health (49).

The sixth point of similarity noted is a concern for quality of life as defined by the client. Although described as a difficult concept to define (50), the notion of ‘Quality of life’ has grown in influence in the broad arena of health care in recent years (30). The concept of quality of life posited by the mental health participants in the present study echoes the palliative care concern that it can only be defined by the client in terms of their own life space. For as Verri and associates (51) clearly state, Quality of Life ‘encompasses both the objective circumstances of living and the degree of positive feelings which people have about their lives’.

The seventh practice resemblance is the focus on the family as the unit of care. As Raingruber (47) notes in regards to mental health patients, people live in webs of relationships including families, communities and cultures.  Although the intimate network of relationships are often problematic because of the negative sequelae of mental illness, psychiatric staff, like palliative care workers, value and try to work within the framework of the familiar unit of care. As will be described elsewhere, the staff indicated that where patients are long-term and family network are absent the staff become a substitute or ‘institutional family’.  There was considerable angst voiced by the staff interviewed about the need to send patients away from the ‘institutional family’ during the dying trajectory because of the lack of in-patient palliative care facilities.  As with palliative care praxis, the concern for the mental health staff was to try to keep the patient within their familiar environment during the distressing time of the dying trajectory.

The eighth professional similarity was in relation to the valuing of democratic, multi-disciplinary team work. As Cleary’s research (33) documents, mental health staff priorities the notion of the flat structure of the multidisciplinary team and believe the complementary skills and expertise of different health professionals are required to deliver appropriate and competent holistic care.

The ninth, and last, point of similarity is the reference to the need for special attributes for staff. As Sand (52) clearly states, the personalities and qualities of nursing staff are now thought to be of considerable significance in their interactions and nursing relationships with patients. The need for special attributes for staff is noted both for working within the mental health system and with those facing the dying trajectory. The findings indicate that for palliative care in a mental health institution staff will require the attributes of an effective psychiatric health carer and the ability to deal with the facts of death and dying.

In summary, then, the findings indicate that there are many positive similarities between mental health and palliative care practice.  The commonalities provide an excellent foundation from which to build the much needed transfer of palliative care ideology and practice into the mental health arena where the profound difficulties associated with the dying trajectory need addressing.

Conclusion
This article has outlined the insights from a group of mental health practitioners who have recorded their struggled with providing end-of-life care in a system where concepts of hospice and palliation are not presently integrated. It is the hope and expectation that the sharing of these insights will not only put palliative care in mental health on the research agenda, but will also establish the beginning of a productive collaboration between two disciplines with a common value and practice base.

Acknowledgement: I would like to thank Mrs Elaine Phillips for her excellent work transcribing the tapes for this project.



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