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.
