Voluntary organisations, palliative care and collaborative research

Barbara Monroe, Chief Executive and

Malcolm Payne, Director, Psycho-social and Spiritual Care,
St Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ
Telephone: 020 8768 4500 Email: b.monroe@stchristophers.org.uk

This paper draws on experience of research in a voluntary organisation managing a

large hospice as a case study of the issues faced in participation in collaborative
research. Therefore it brings together consideration of the implications for
collaborative research of:

ƒ working within a multiprofessional healthcare specialty, palliative care, that is

particularly concerned with holistic care;

ƒ voluntary or third sector management and governance responsibilities in

health and social care;

ƒ service user involvement issues in a health and social care specialty delivered
in state-regulated voluntary sector organisation in close relationship with
powerful statutory sector agencies.

The following section provides a brief introduction to St Christopher’s Hospice as

voluntary sector palliative care organisation site for research collaboration. The
following three sections give three case studies of collaborative research programmes
carried out at the Hospice. In the discussion, issues are drawn from these studies,
which are summarised in the conclusion.

St Christopher’s Hospice as a research collaboration site

Founded by Dame Cicely Saunders in 1967, St Christopher’s was the first modern
hospice, and now provides a comprehensive palliative care service to an ethnically
and socially diverse area in south London to around 600 people each year in its 48-
bedded Hospice, and in 2,000 people’s homes through a home care service. It is a
registered charity with a service level agreement for the provision of specialist
palliative care with a consortium of five local primary care trusts, the present NHS
mechanism for commissioning services from independent providers of services.
Services include:
ƒ in-patient medical and nursing care led by consultant physicians and nurses;
ƒ 24-hour, seven days a week home care led by clinical nurse specialists in
teams focused on each of our five local-authority and primary care trust (PCT)
areas
ƒ home nursing and other care to patients in their own homes;
ƒ day care including creative therapies using conventional and digital arts,
music, drama and creative writing and complementary therapies such as
acupuncture, aromatherapy, hypnotherapy, massage and reflexology;
 Voluntary organisations, palliative care and collaborative research - 2

ƒ social work, including bereavement support and welfare rights services;

ƒ a chaplaincy to provide spiritual and religious care;
ƒ psychiatric treatment;
ƒ physiotherapy and occupational therapy.
All these are incorporated into a complex texture of care reflecting the historic
commitment of palliative care to a multiprofessional holistic model of care that cares
for people, their social networks and their communities in total so that care
‘…reaffirms a person’s life and relationships’ (Saunders, 2004: xx). The Hospice’s
status as the staring point of the development of modern hospices derives from Dame
Cicely Saunders’s early experience and research (Saunders, 1963). Throughout her
life she continued to publish medical and other writings, promoting her ideas and
palliative care (Saunders, 2006). This included a general textbook, now in its fourth
edition, edited by her successor as medical director (Sykes et al, 2004). Therefore the
Hospice has a tradition of education, research and publication that is integral to its
vision and objectives. As an innovation, the Hospice was structured as a voluntary
organisation, since this new development had not reached acceptance in conventional
healthcare. Although mainly a local service provider, it has national and international
knowledge development, information and education as a way of disseminating its
vision of palliative care. As a consequence, more than many service providers, the
Hospice has an interest in research and development that goes beyond auditing,
evaluating and thus justifying its own service provision.
The research tradition and imperative at St Christopher’s has included collaboration
with local universities, pre-eminently King’s College London and its associated
Institute of Psychiatry. The Hospice’s education centre provides a range of training
for local health and social care professionals, and nationally and internationally,
including two courses that are validated at postgraduate level by King’s College
London and Middlesex University, and a module in the King’s College London
nursing programme on Foundation skills in palliative care nursing. The Hospice has
also provided medical and other professional education through training placements
and opportunities to carry out research as part of higher degrees. These structures
provide a range of opportunities for collaborations in both education and research that
provide a way in to the Hospice for researchers. It also attracts staff with an interest in
education and research, thus further stimulating activity among the existing staff
group.
To manage this, the Hospice has established a research governance process that
complies with the NHS requirements for health governance (DH, 2005). This includes
a committee chaired by the medical director including external academic
representation. Research projects are proposed to the committee, which if it approves
them, allocates responsibility for facilitating them to a member of the senior
management team. A research and audit committee of middle managers examines the
proposed projects for practical difficulties, facilitates the recruitment of research
subjects and receives reports for feedback to the staff and service users involved in the
project.
We can see these processes at work in the following three examples of research
programmes carried out at the Hospice. PROMOTE was a collaboration devised
 Voluntary organisations, palliative care and collaborative research - 3

jointly by a senior member of the Hospice and academic staff at a collaborating

university to pursue the development of palliative care outcome and evaluation
measures with ambitious goals of improving care nationally. The CBT (cognitive-
behavioural therapy) project arose out of a teaching, research and clinical
collaborative development between the Institute of Psychiatry and the Hospice and
was devised to pursue both academic knowledge development objectives and hospice
objectives of improving patient care and nurses’ therapeutic skills. The day unit
programme arose primarily from the development and practice interests of the
Hospice and its staff and was devised to pursue both academic knowledge-
development objectives and hospice objectives of improving patient care and nurses’
therapeutics skills.

PROMOTE

The PROMOTE project was a significant grant of £0.5 million from the now
Community Fund over three years to the Hospice as fund holder in partnership with
King’s College who were undertaking the Research. The project involved the
development and evaluation of a retrospective questionnaire to assess quality of care
in the last year of life irrespective of diagnosis and similarly a prospective
questionnaire to evaluate needs, problems and outcomes across a range of settings.
Finally systems of regular feedback to Commissioners and providers were to be
developed and evaluated (Addington-Hall 2004). The project quickly ran into
significant difficulties for all three parties. Soon after the recruitment of the research
team the Hospice experienced major financial problems which were reported to the
Community Fund. Although these financial problems were resolved, the research
project inevitably came under particular scrutiny from the Community Fund. In
addition the Chief Executive, Hospice lead on and co-author of PROMOTE, left St
Christopher’s at this time. The Community Fund’s very strict requirements about
financial controls on research projects became a source of tension between the
Hospice and the research organisation. The Fund required that all expenditure was
fully itemised and invoiced. The research organisation said that it had had no
experience of controls at this level of detail and initially their centralised accounting
function found it difficult to comply with the Hospice’s requirements within the
necessarily tight time constraints. The Community Fund had locked transfer of
monies from the Hospice to the research organisation until such detailed controls were
established. Inevitably this caused anxieties about the security of the employment of
research staff.

Early on the research team encountered significant difficulties in the recruitment of

research sites across a variety of settings; these were never resolved. Although
subsequently some fascinating insights into the barriers to recruitment were derived,
the value of the practical outcomes of the research from the Hospice’s perspective was
compromised. Similarly efforts to translate questionnaires into Bengali, Punjabi and
Urdu in order to highlight the needs of underserved groups and different cultures
revealed as much about the difficulties of translation as the development of easy to
use tools. Policy developments and changes to the sampling frame resulted in major
revisions to the project and the research plan. The Community Fund therefore
requested a comprehensive grant variation report which was to be assessed by
external review. Again the research organisation expressed strong views that it had
had no previous experience on similar large grants of such engagement with the
 Voluntary organisations, palliative care and collaborative research - 4

research process itself by the grant funder. Issues were eventually resolved to the
satisfaction of all three parties. However, for the Hospice the time resource involved
in negotiations was considerable and at various stages the Hospice experienced
serious potential financial and reputational risks since the Community Fund made it
clear that they could withhold or ask for repayment of grant monies if irremediable
breaches of grant conditions occurred.

The PROMOTE project was successfully completed and generated over 16 published
academic papers and several oral and poster presentations at conferences. Most
usefully from the hospice’s perspective, a user manual for the Palliative care Outcome
Scale was produced, backed-up with a website for user support (Aspinal 2002). From
an academic perspective the project yielded useful data about the difficulties involved
in developing and evaluating questionnaires for use across a variety of settings at the
end of life. Practical outcomes in terms of improvements in patient care and in
particular for more vulnerable patient populations, were less in evidence.

Cognitive behavioural therapy (CBT)

The CBT project came about as a result of the continuing relationship with the
Institute of Psychiatry, University of London, which provides through a research,
education and clinical service contract, a liaison psychiatry service for the Hospice.
As part of that contract, Institute staff regularly undertake research projects on the
Hospice’s work, of interest to improving the Hospice’s services. A recent example is
an audit of the use of benzodiazepine psychotropic medication with patients
(Henderson et al, 2006); a controversial area, since there is a debate about the overuse
of psychotropic drugs generally. The study provides evidence of the issues that arise
in palliative care. The Director of Nursing at the hospice was interested in developing
skills in a short term focused therapeutic approach, as part of the available skill set for
palliative care nurses. Aims were both to develop their knowledge and practice base
and to meet patient and family needs, in particular, around the management and
treatment of anxiety and depression. A high proportion of people dying from cancer
experience symptoms of anxiety and depression and the Institute’s philosophy favours
‘talking’ rather than medication therapies alone. However CBT has often been
provided by specialist mental health professionals, and this limits its widespread use
since such staff are in short supply. Also, there was only weak evidence of CBT’s
applicability in everyday practice settings.

Therefore, the proposal was to train a group of clinical nurse specialists (CNSs) with
considerable expertise in palliative care, through a short course, to use some CBT
techniques as part of their everyday work, rather than train comprehensive CBT
therapists. The project was established as a randomised controlled trial, so that there
would be evidence of the effectiveness of the training programme and the application
of the therapy. Thus, the nurses were divided into two groups, one receiving the
training and using CBT in their work, and one working ordinarily. Patients were also
divided into two groups, one of which received CBT and the other did not. The
project was eventually externally funded by a grant to St Christopher’s from the
Gatsby Foundation.

The Hospice management hoped that this project would strengthen the career
development of CNSs, and increase their confidence and skill in meeting patients’
psychological needs. It would also help a group of patients who experienced
 Voluntary organisations, palliative care and collaborative research - 5

considerable distress, thus meeting its palliative care objective of managing all
patients’ symptoms, not just physical problems.

There were considerable management issues to deal with. Nurses not provided with
the training, as part of the project, were offered the training subsequently so that their
career development was not disadvantaged. Organisational and life events impacted
on the availability of nurses to complete the interventions. Some nurses left the
hospice, others were sick for brief or prolonged periods. Practical issues consequent
upon this meant that nurses had to be reallocated across teams. Issues then arose
about whether patients were randomised to a nurse or to a caseload and realities of
sustaining service delivery conflicted with the agreed research design. Urgent patient
need for visits also sometimes made it difficult for nurses to keep to agreed
supervision slots. The added burdens of undertaking focused therapeutic work in
patients’ homes with the normal level of disorganisation associated with a vulnerable
and often socio-economically deprived population were clear. Nurses’ and patients’
anxieties about regular audio-taping had to be overcome. To recruit and assess
patients independently, a researcher was appointed to carry out tests to support nurses
in participating in the project. The additional load on severely ill patients was
considerable. All patients referred to the nurses were screened with the Hospital
Anxiety and Depression Scale. Those who scored greater than 8 completed a further
set of questionnaires at a research visit. Patients were reassessed at 6 weeks, 10
weeks and 16 weeks. Exclusion criteria around physical capacity and severe
communication impairments, added to a minimum of four CBT sessions, led to
considerable fall out in study numbers; during the course of the trial patients became
too ill or died. It was clear that carrying out a study of this nature with people close to
the end of their lives is challenging. 40% of patients had a physical, cognitive or
communicative impairment which prevented them entering the trial. A further 40%
were not well enough to complete the study. However it was clear that patients and
their carers valued the CBT treatment enormously.

The study has nonetheless been completed and recruited sufficient numbers of
patients. The training study showed that nurses could be trained in a short course to
use the techniques, and then did in fact use them. The data collection for the study of
outcomes has recently been completed, and the initial findings show that there were
successes; nurses trained to use basic CBT skills in their home visits had a greater
impact on anxiety symptoms than nurses not trained in those methods. The results
have been reported at professional and academic conferences, although the final
publications are still to appear. One of the frustrations for the Hospice is that, in a
fast-moving field, research projects of any significance take so long to complete and
come to publication. Often the management and service imperatives that led to a study
lie in the past by the time the work is complete. For example, many of the nurses who
undertook the training have now moved to other posts and newly-recruited nurses,
who were not present during the time of the study may have less interest in
undertaking the training and developing the skills. There is also less support and
supervision available to use the skills appropriately now the study has finished. These
factors in research often deplete the impact of research on practice innovations.

Day care research

During the 1990s, day care was ‘one of the most rapidly growing aspects of palliative
care services’ (Goodwin et al, 2003: 202). However, its initiation is traceable to an
 Voluntary organisations, palliative care and collaborative research - 6

innovative day unit in Sheffield reported and assessed in a widely-quoted article

(Wilkes et al 1978). Eve (2004) found that Minimum Data Set information shows a
rapid increase in the number of centres in the 1980s and ‘90s, from 30, when
information was first collected in 1985 to 247 in 2003, while average number of
places and percentage occupancy have stayed stable at around 14 and 65%
respectively since this information has been collected (see Table 1).

Table 1 about here (please see end of paper)

St Christopher’s Hospice was part of this trend, and its day unit became an important,
lively and innovative aspect of its provision, so much so that there has been a
continuing commitment to developing its contribution to the overall provision of the
Hospice’s work. Achieving this involved supporting managers in innovative activities,
with funding and management support, developing new innovative activities as
projects within the Centre’s work, encouraging and supporting staff involvement in
professional organisations and extending staff’s intellectual and professional thinking.
Examples of this development were extending the provision often offered within day
care to the bedside in the in-patient unit, with the aim of involving family visitors to
patients and offer opportunities for patients at the end-stage of their illness, the
inclusion of new arts opportunities, such as music therapy within the programmes,
and eventually the creation of a Creative Living Centre separately from the day unit,
to offer its resources more flexibly to groups and settings within the Hospice and in
the community. A number of funded projects were created at various times to develop
this range of work, and most of these involved either audits or practitioner research
projects.
An important element of the Hospice’s development of day care was a variety of
research and knowledge-development activities. Staff were encouraged to think about
and present their work in the Hospice’s education programme for palliative care
professionals, at meetings of professional organisations such as the palliative day care
leaders organisation and through articles in professional journals (for example,
Gibson, 1995; McCloughlin, 1995, 1997).
Post-qualifying education also provided opportunities when the day unit manager
undertook a part-time masters qualification. The Hospice agreed that a piece of
qualitative research should be undertaken for the dissertation. When published in a
major palliative care journal (Kennett, 2000), this drew on the person-centred
philosophy of the course to theorise the provision of creative activities as a practice
enabling patients to achieve grater self-actualisation in the final phase of their life, and
provided evidence of the high valuation patients put on this opportunity. Kennett
(2001, 2004) was able to continue to assert this theorisation in later textbook chapters.
The widespread development of day care provision led to attempts to examine its
value, and the two published texts on day care work both explored methods of audit
and needs assessment (Higginson, 1996, Higginson and Goodwin, 2001). Following
on early surveys of palliative day care, a comparative study of the services offered by
day units was carried out by an academic department with which St Christopher’s has
links and shared teaching programmes (Higginson, et al, 2000). Subsequently, a
comparative study of day units’ effectiveness in meeting pain control and quality of
life objectives and in reducing usage of alternative services were carried out by the
 Voluntary organisations, palliative care and collaborative research - 7

same department (Douglas et al, 2000, 2003; Goodwin et al, 2003). This work
demonstrated that day unit patients liked attending, but outcomes were not
demonstrated. Qualitative studies published at much the same time (Langley-Evans
and Payne, 1997; Lawton, 2000) showed that activities in some day care centres were
not always purposeful, in spite of strong patient support for them.

The publication of authoritative guidance on provision of palliative and supportive

care for adults with cancer was eagerly awaited to provide a benchmark for the
development of palliative care and was published by the National Institute for Clinical
Excellence in 2004. Drawing on these research findings, it made uncomfortable
reading for supporters of palliative day care. The Guidance (NICE, 2004: 130-1)
describes the potential benefits of ‘specialist day therapy’ as enabling a range of
services ‘…to be brought together in one setting. It also brings patients together,
providing social support and access to facilities, and can offer respite to carers.’
However, it commented on the lack of evidence for the value of the contribution of
palliative day care to supportive and palliative care, particularly for cancer patients
but also more widely. Goodwin et al (2003) have pointed to substantial problems in
researching day care outcomes, and doubt whether quality of life data adequately
measure intended outcomes. They argue that more effective specification of the
objectives of palliative day care is required to enable policy for provision to be
established. They also point out that many referrals are made for social support, but
most measures of quality of life in health care refer to aspects of life such as pain or
breathlessness. They suggest adding social domains to quality of life measures.

A research review was undertaken as the basis for the NICE study. Summarising the
research evidence, it comments:

The growth and popularity of day care over the last 20 years
suggests that providers perceive it as a successful way of offering a
specialist service to meet the complex needs of a proportion of
cancer patients already receiving palliative care. All studies that
have questioned patients have so far found high levels of
satisfaction with the care they receive…[I]n the units studied day
care has been successful in achieving a responsive, compassionate
and patient-centred service for the patients selected into care.
However, many wider questions remain. Studies have been
hampered by the difficulty of fully evaluating a service already in
operation and of recruiting and studying a vulnerable and
deteriorating population of patients. It is therefore difficult to be
sure that the right aspects of the service structure, care processes or
outcomes have been properly measured. This is especially so since
the findings to date suggest that the benefits are more likely to be in
the social, psychological and spiritual domains rather than in the
more traditionally “medical” and more easily measured areas of
quality of life and symptom control. The best models of care and the
skill mix needed to achieve the outcomes patients most desire has
yet to be formally determined. Issues of access to care including the
wider acceptability of day care for patients who are not referred or
else decline it, the benefits for relatives and carers and its cost also
have still to be tackled (Gysels and Higginson, 2004: 271).
 Voluntary organisations, palliative care and collaborative research - 8

This lack of evidence led the NICE Guidance (2004) not to recommend
national standards for provision of palliative day care, instead suggesting that
whether and how it should be provided should be a matter of local
determination. This left providers to negotiate locally with commissioners
rather than having a national benchmark, and placed day care at risk of
lower-priority funding. Users’ positive views of the social and personal
benefits of day care were thus devalued by positivistic research concerned
with healthcare objectives.
At the same time, a local medical school began using group discussions between day
patients observed by medical students as a teaching tool (Edmonds, et al, 2004).
Responding to the unsuccessful outcome studies, the day unit manager determined to
build on her research experience achieved through her masters course, to use these
group discussions to explore patients’ experiences in greater detail through a
qualitative study. She hoped to emphasise service user’ views as a way of generating
continuing political and funding support for day care. At the same time that these
ideas were developed a new senior manager with a background in academic social
sciences was appointed, partly attracted by the Hospice’s research tradition, and
provided support, supervision and guidance in devising and managing the project,
which was brought to fruition and published (Kennett and Payne, 2006).
During this time, the senior manager, as a new member of staff, determined to
develop his understanding of the services he was responsible for by undertaking a
literature review on palliative day care. The service aim of this work was to use his
social science and social work background to identify the social objectives and range
of services available for local commissioning, since this was the model of provision
proposed by the NICE guidance. This led to papers summarising potential social
objectives that might affect commissioning, published in a health service management
journal (Payne, 2006s) and researchable social objectives (Payne, 2006b) to inform
the healthcare debate. This work has also been used at conferences and in teaching
within the Hospice’s education programmes.

Discussion

The description of St Christopher’s Hospice as a research site draws attention to a

number of factors that might make a voluntary organisation a useful collaborator in
research. The research traditions of the Hospice generate a culture of research, and its
education and research programmes permit staff involvement in research and
knowledge development activities. These traditions also attract staff interested in and
competent in research, and were a factor in the process that led to the adoption of
formal research governance processes that are more typical of larger, official
agencies. This in turn facilitates and supports staff and outside researchers in carrying
out their research. The interaction of institutional relationships developed between
academic departments and voluntary organisations as part of educational provision
and shared service provision is also an important structural driver for effective
research collaboration.

The PROMOTE study demonstrates the difference between the satisfaction of

academic objectives and the practical outcomes desired by service providers. It also
draws attention to the considerable resource and governance implications for
voluntary organisations of becoming the fund-holder and research manager. It may be
 Voluntary organisations, palliative care and collaborative research - 9

difficult for voluntary organisations to develop or access the necessary legal

knowledge to establish equitable research agreements. Over longer projects personnel
changes in both the research team and the voluntary sector organisation can diminish
personal understandings and contractual compliance as well as interfering with project
deadlines. For voluntary organisations the cost of research may bring value for
money issues to the fore.

The CBT study demonstrates the value of continuing collaborative relationships

between academic and service providing organisations in getting research going.
However, it also shows how difficult it is to use research to achieve staff development
and service provision objectives. In a complex area, attempts at research that shows
causation through random control trials are hard to bring to fruition, even though a
strong effort is made. This factor also affected the day care work: major studies that
participants hoped would validate their work were inconclusive because the research
techniques (comparative outcome research) and focus (on healthcare rather than social
objectives) vitiate their worth in evaluating services.

Involving service users in research has raised a variety of issues. Palliative care
patients are suffering from advanced disease and often experience very serious
symptoms, for which extensive care and treatment is required. They often have little
energy. However, they are strongly motivated by altruism to contribute to research
efforts, and are generally happy to take part in research. One of the issues highlighted
by the day care work is that patients’ high valuations of a service may not be
confirmed by research. Day care users at the hospice were confused and bewildered
by what they perceived to be negative study outcomes. The complexity of patients’
needs and the combinations of service required to meet them often, as in the CBT and
day care work, prevent clear research outcomes being achieved. Often, a voluntary
organisation needing to raise money and manage complex and expensive services
cannot achieve the research outcomes necessary to develop its work. A focus on
outcomes also supports government policy and funding decisions, as we see from the
NICE guidance on day care, so that failings in outcome research then have an adverse
impact on political and funding support for a service that is highly rated by service
users. How are managers, commissioners and politicians to work with the balance
between service user preferences and inconclusive research outcomes?

As users they are also in a different position from many of the leading proponents of
user participation in services and research, who have been receiving poor quality
long-term care provision. After what may have been a lengthy involvement in curative
treatment, the transfer to palliative care often offers a completely different experience.
Palliative care is a relatively low-technology healthcare setting, whereas treatment
services often involve high levels of medication and technology use. The palliative
care focus on interpersonal care, with a high ratio of nursing and other health and
social care staff to patients produces a different feel. Therefore, patients and relatives
often feel that they have an exceptionally good experience in palliative care,
compared with their experience of curative treatment within secondary healthcare
provision, and satisfaction ratings for palliative care are generally high. They are also
going through an important social experience of death and bereavement in which
emotional reactions to life experience are heightened. Perhaps they are unrealistically
generous about their experiences of palliative care because it offers something (but
something that to a professional may not be as good as it might be) at a particularly
 Voluntary organisations, palliative care and collaborative research - 10

important time, emotionally. How are these various conflicting factors to be balanced
against inconclusive research outcomes?

The day care work demonstrates the contribution that particular staff may make to
research development and how this interacts with management objectives to day care.
The motivation for the day care work derives from a management commitment to day
care within the Hospice, from the staff to their work and from reaction to political and
professional developments. Higher degrees undertaken by staff are an important
resource for research input to a voluntary organisation. The initial study of patients’
experiences of the day unit and the theoretical basis of the manager’s formulation of
self-actualisation as an objective of the creative arts programme were an important
starting point for the Hospice’s thinking about the centre and came from the person-
centred perspective of her masters course and the requirement to carry out a piece of
research. This led to publication in a leading journal, and gave her confidence, faced
with the policy critique from the comparative research studies, to carry out further
research using similar techniques. The availability of a manager to support and
develop the direction of this work allows the Hospice to respond to changing
managerial and policy environments.

Conclusion

These accounts of three research programmes at St Christopher’s Hospice show that

research may be a way for the voluntary organisation to pursue its policy and service
agenda. It may be an important motivator and development opportunity for staff.
However, these case studies also demonstrate the organisational, management and
collaborative environment that is required to make this happen. The Hospice is an
organisation with a research tradition built up over nearly forty years, and is thus able
to some extent to attract staff to participate in collaboration with academic
institutions, and to seek funding based on a track record of achievement and
commitment in research. It is less clear that such an approach may be generalised to
all voluntary organisations in a very diverse sector.

Many of these research experiences also point to the difficulty for even well-funded
and complex research to make a contribution to managing and developing service
provision in a complex and fast-moving service context. The outcomes are slow to be
achieved; they are only part of a complex service profile and may be inconclusive.
Patients’ valid and well-supported views may be devalued in the absence of these
outcomes. Yet, as the day care work shows, even well-conducted research may focus
on objectives that are not relevant to service users’ interests or to the objectives of the
service providers. In this case, guidance derived from research with healthcare
objectives failed to incorporate social objectives and patient opinion. Outcomes
focused on academic or healthcare organisations’ objectives may therefore not be
valued by service users because the outcomes do not focus on their interests or
validate their views. Also, while research activity may interest service users and
engage their support as it takes place, in palliative care the long timescale of much
research means that dying patients may not see outcomes and their families and carers
may also have moved on so that there is no direct feedback from research to them.
Managers, commissioners and funders have to continue service in spite of
inconclusive research outcomes that do not connect with their or service users’
interests and objectives.
 Voluntary organisations, palliative care and collaborative research - 11

Therefore, although St Christopher’s Hospice has successfully used research

collaborations to work towards its service objectives, both in auditing and evaluating
its services and as part of staff development and education and it has also been
involved in successful research to achieve knowledge development in its field; these
three elements of research collaboration are often divorced from each other. All are
valuable, but we cannot assume that every project can contribute to all three.
 Voluntary organisations, palliative care and collaborative research - 12

Bibliography
Addington-Hall JM, Aspinal F, Hughes R, Dunckley M, Higginson IJ (2004). Project
to Improve Management of Terminal Illness. Summary of Findings from
PROMOTE. (London: National Council for Palliative Care).
Aspinal F, Hughes R, Higginson IH, Chidgey J, Drescher U, Thompson M. (2002). A
User’s Guide to the Palliative Care Outcome Scale. (London: King’s College
Department of Palliative Care and Policy).
DH (2005) Research Governance Framework for Health and Social Care, (2nd edn)
London: Department of Health.
http://www.dh.gov.uk/assetRoot/04/12/24/27/04122427.pdf (accessed: 3rd
October 2006)
Douglas H-R., Higginson I.J., Myers K. & Normand C. (2000) Assessing structure,
process and outcome in palliative day care: a pilot study for a multicentre trial,
Health and Social Care in the Community 8(5): 336-44.
Douglas H-R., Normand, C.E., Higginson, I.J., Goodwin, D.M., & Myers, K. (2003)
Palliative day care: what does it cost to run a centre and does attendance affect
use of other services? Palliative Medicine 17: 728-37.
Edmonds, P., Burman, R. and Sinnott, C. (2004) The goldfish bowl, European
Journal of Palliative Care 11(2): 69-71.
Eve, A. (2004) Personal communication.
Gibson, A. (1995) Creativity in hospice – a celebration of achievement, Occupational
Therapy News, June 1995, 4-5
Goodwin, D. H., Higginson, I. J., Myers, K., Douglas, H.- R. and Normand, C. E.
(2003) Effectiveness of palliative day care in improving pain, symptom
control, and quality of life, Journal of Pain and Symptom Management 25(3):
202-212.
Gysels, M. and Higginson, I. J. (2004) Improving supportive and palliative care for
adults with cancer: Research Evidence, London: National Institute for Clinical
Excellence.
Henderson, M., Macgregor, E., Sykes, N. and Hotopf, M. (2006) The use of
benzodiazepines in palliative care, Palliative Medicine, 20(4): 407-12.
Higginson, I. (1996) Clinical audit, evaluation and outcomes, in Fisher, R. A. and
McDaid, P. (eds)(1996a) Palliative Day Care, (London: Arnold): 108-17.
Higginson, I. J. and Goodwin, D. M. (2001) Needs assessment in day care, in Hearn,
J. and Mayers, K. (eds) Palliative Day Care in Practice, (Oxford: Oxford
University Press): 12-22.
Higginson I.J., Hearn J., Myers K. & Naysmith A. (2000) Palliative day care: What do
services do? Palliative Medicine, 14(4): 277-86.
 Voluntary organisations, palliative care and collaborative research - 13

Kennett, C. (2000) Participation in a creative arts project can foster hope in a hospice
day centre, Palliative Medicine, 14(5): 419-25.
Kennett, C. (2001) Psychosocial day care, in Hearn, J. and Myers, K. (eds) Palliative
Day Care in Practice, (Oxford: Oxford University Press): 59-78.
Kennett C. (2004) Specialist palliative day care, in: Sykes N., Edmonds P. & Wiles J.
(eds) Management of Advanced Disease, 4th edn, London: Arnold: 538-44.
Langley-Evans, A. and Payne, S. (1997) Light-hearted death talk in a palliative day
care context, Journal of Advanced Nursing 26: 1091-7.
Lawton, J. (2000) The Dying Patient: Patients’ experiences of palliative care,
(London: Routledge).
McLoughlin, D. (1995) Creative writing in hospice, Hospice Bulletin October 1995:
8-9.
McLoughlin, D. (1997) Teaching writing in a hospice day centre, Writing in
Education, 11 (Spring): 7-9.
NICE (2004) Improving Supportive and Palliative Care for Adults with Cancer: The
Manual, (London: National Institute for Clinical Excellence).
Payne, M. (2006a) Commissioning and managing palliative day care, British Journal
of Health Care Management, 12(8): 240-4.
Payne, M. (2006b) Social objectives in cancer care: the example of palliative day
care, European Journal of Cancer Care (forthcoming).
Saunders, C. (1963) The treatment of intractable pain in terminal cancer, Proceedings
of the Royal Society of Medicine 56(3): 195-7.
Saunders, C. (2006) Cicely Saunders: Selected Writings 1958-2004, (Oxford: Oxford
University Press).
Saunders, C. M. (2004) ‘Forward’, in Doyle, D., Hanks, G. & Cherny, N. I. (eds)
Oxford Textbook of Palliative Medicine, (3rd edn). (Oxford: Oxford University
Press): xvii-xx.
Sykes N., Edmonds P. & Wiles J. (eds)(2004) Management of Advanced Disease, (4th
edn)(London: Arnold).
Wilkes, E., Crowther, A. G. O., and Greaves, G. W. K. H. (1978) A different kind of
day hospital – for patients with preterminal cancer and chronic disease, British
Medical Journal, 2: 1053-6.
 Voluntary organisations, palliative care and collaborative research - 14

Table 1 Day care provision in the UK

Year Day Care Units Av no of places Sessions/year %age occupancy Comments

Jun-85 30

May-87 60

Jun-88 88

Jan-90 114

Jan-91 149 12 - 15 4 or 5 /week >60

Jan-92 185

Jan-93 197

Jan-94 206

Jan-95 215

Jan-96 227

Jan-97 227

Jan-98 238 13 218 67

Estimates: probably unreliable
Jan-99 247 11 250 70

Jan-00 234 14 227 67

Jan-01 242 14 219 65

Jan-02 243 14 213 65

Jan-03 247 14 219 62

Source: Eve (2004) from MDS information, National Council for Hospice and
Specialist Palliative Care