In 2004, the National Institute for Clinical Excellence (NICE 2004) produced a report that looked at ways in which supportive and palliative care for adults with cancer could be improved. Several important principles were developed from this report, including particularly that patients with cancer wanted:
to be treated as individuals;
to be treated with dignity and respect;
to have their voices heard in decisions about their treatment and care;
to have detailed information about their condition, possible treatments, and services;
to have good face-to-face communication with the professionals;
to have services that are of high quality and well co-ordinated;
to have the opportunity of the best control of their symptoms;
to have the opportunity for psychological and social support (and spiritual support if desired);
to have the opportunity for psychological and social support (and spiritual support if desired);
to die in the place of their choice;
for their families and carers to receive optimum support during their illness;
support for their families and carers following their death.
However, whilst many patients reported that their experience of the care that they had received was good, there were still too many who had had more negative experiences. In particular, a survey of patients (DoH 2002) demonstrated that across the country there were wide variations in the quality of care that patients with cancer experienced. The NICE (2004) report explained that there were several reasons for poor supportive and palliative care experienced by some patients. These were enumerated as:
the lack of universal availability of supportive and palliative care services;
patients may not be recognised by professionals as requiring these services, and are consequently not referred to the palliative care services;
poor inter-professional communication and co-ordination may hamper attempts at good-quality care.
The NICE Guidelines (2004) make 20 important recommendations. Of those 20 recommendations, 4 are of particular importance in looking at the background of this research project, namely:
Key Recommendation 1: Within each Cancer Network, Commissioners and providers (statutory and voluntary) of cancer and palliative care services, working with service users, should oversee the development of services in line with the recommendations of this Guidance.
Key Recommendation 4: Mechanisms should be in place to ensure the views of patients and carers are taken into account in developing and evaluating cancer and palliative care services.
Key Recommendation 13: Primary care teams should Institute mechanisms to ensure that the needs of patients with advanced cancer are assessed, and that the information is communicated within the team and with other professionals as appropriate.
Key Recommendation 14: In all locations, the particular needs of patients who are dying from cancer should be identified and addressed.
The emphasis in the above four recommendations denotes the part of the recommendation that is central to this proposed research project.
The NICE (2004) Guidelines also discuss the role of research in supportive and palliative care. This addresses three main themes, namely:
The needs for palliative supportive care.
The importance of palliative and supportive care to those affected by cancer, and also to society.
Effective solutions to the needs of the patients.
In terms of study design, the NICE Guidelines discuss the relative merits of quantitative and qualitative studies. The authors of the Guidelines do not dismiss the relevance of the hierarchy of research - with a randomised, controlled trial providing the highest-level evidence, and consensus amongst professionals and/or service users being the lowest-level evidence. However, the point is made that this hierarchy takes "no account of the relevance of individual studies to the problem affecting patients and families, nor of the healthcare context in which the service is operated" (NICE 2004:170).
The point is also forcefully made that qualitative research is able to examine the effectiveness of any interventions (certainly as perceived by the individual). Qualitative research is also able to provide more detailed interpretations of need, as well as more detailed descriptions of interventions.
Finally, the Guidelines discuss the need for measuring outcomes of interventions, and express the concern that there should be a system of routine collecting of outcome information which would be included in the care of patients with cancer - and not just biological markers.
In particular, The NICE Guidelines (2004:172) state that
'Prospective measures of outcome which reflect patients' and carers' experiences at all stages of disease should be further refined and developed.
Work to develop a core set of person-centred outcome measures robust enough to capture changes over time, for worse or better, should be pursued.'
It is with these NICE Guidelines (2004) in mind, that this research project aims to initially elicit from service users and professionals the perceived and actual needs that the supportive and palliative care services should be meeting. In addition, it also aims to find out how these needs can be met, as well as how well they are being met at present. From the results of this research study, a set of outcome measures will be developed at a later stage that will then provide for the routine collection of outcome information that can be regularly assessed, as suggested by the NICE Guidelines (2004).
Within health care provision in the UK, palliative care holds a unique position in that the foundation of palliative care lies within the hospice movement, which itself was based on voluntary giving (Cooper & Hewison 2002). Consequently, much of the palliative care service provision remains within the independent sector of health care and many units retain charitable status. This means that much of palliative care provision has developed and expanded outside of NHS provision, which in turn has meant that the practitioners within the specialty have experienced a greater degree of autonomy than have practitioners within the NHS (Clark 1993).
According to the World Health Organisation (1990) palliative care can be defined as being the active total care of patients whose disease does not respond to curative treatment. Over the last 30 years or so, there has been a marked increase in palliative care provision (Cooper & Hewison 2002). The question to be asked, however, is whether or not this care is of a high quality and is geared to meet the needs of patients requiring palliative care, and their families. To attempt to answer this question, it is necessary to look at quality assurance, which can be linked in with clinical governance. Schofield in 1990 maintained that within the provision of health care, quality assurance is concerned with ensuring that people work together, use the best available resources, and listen to the patient group, in order to provide the best possible care for that patient group. Naysmith (2004:329) puts it even more bluntly 'clinical governance is simply a term for doing the right thing right in the right way at the right time'. Shaw (1989) suggested that in order to assess whether or not the care given is of a sufficiently high quality, it is necessary to accomplish this care through the definition of standards, the measurement of whether or not they have been achieved, and whether there are mechanisms in order to improve care if these standards have not been met. This is expanded by Naysmith (2004), who explains that the three processes in measuring quality are:
compliance with standards for structure and process;
the minimisation of complaints and other incidents;
the measurement of outcomes, which have previously been determined.
Clinical governance/quality assurance is, according to Naysmith (2004), the final outcome of a number of processes, including clinical effectiveness, risk management, patient experience, communication, resource effectiveness, strategic effectiveness, and learning effectiveness.
The challenge then becomes one of how best to manage clinical governance/quality assurance. One of the best ways of managing quality assurance - of defining it and measuring it - is by the use of an audit (Cooper & Hewison 2002). As Hughes et al. (2003:234) state, 'Health-care professionals are increasingly required to embrace quality improvement, to base clinical practice on evidence, and to set clear protocols and standards for clinical practice'. Because palliative care developed in a haphazard and unplanned way, due to the way in which hospices came into being, and because there is such diversity of provision within the specialty, then there are conceptual and even technical difficulties using standard measures of quality assurance (Robbins 1998). This has meant that the measurement of quality care has often been focused on just one aspect of it, such as pain, or for example, urinary catheterisation (Gannon 2004), or referral procedures (Ling 2000). Whilst these individual aspects of palliative care are very important to the patient, they are not evidence of effective full palliative care meeting all the needs (physical, psychosocial, emotional and spiritual) of the patient and family (Cooper & Hewison 2002). There are further problems when trying to assess the effectiveness of palliative care services, and this is the fact that according to Clark and Seymour (1999) and the National Council for Hospice and Specialist Palliative Care Services (2001) the essence of hospice care and specialist palliative care is multi-professional teamwork. While to do this may lead to improved holistic care, it can also lead to further problems such as selecting suitable multidisciplinary measurement tools or bringing all members of the multidisciplinary team together at the same time in order to complete joint assessments.
So just how can we assess the evidence of effective palliative care? Cooper & Hewison (2002) stress that in selecting suitable outcome measures for the auditing of palliative care services and delivery it is very important to select an audit tool that measures the aspects of care that actually reflect the specific aims of palliative care provision. Over the past few years, many such tools have been developed, for example the Support Team Assessment Scale (Higginson 1993), which is a validated measure of the effectiveness of palliative care (Higginson & McCarthy 1989, Carson et al. 2000, Cooper & Hewison 2002). Other well-used audit tools are the Palliative Care Outcome Scale (Hearn & Higginson 1999, Goodwin et al. 2003) and the McGill Quality of Life Questionnaire (Cohen et al. 1995, Cohen et al. 1997, Goodwin et al. 2003, Slater & Freeman 2004). Another questionnaire that has been used with carers of patients accessing palliative care services is the Views of Informal Carers - Evaluation of Services (Addington-Hall et al. 1998). Naysmith (2004), however, has some problems with this being a proxy questionnaire because it does not ask the patients for their views but rather their carers after the patient's death. However, it needs to be stressed that the services have to be able to support the carers as well as the patients.
In addition there have been audits undertaken which are positioned within the philosophies inherent in qualitative research. With these audits, the patients, the carers, and also the professionals are actually asked whether or not, in their opinion, the palliative care services are working effectively (Ingleton 1999, Randhawa & Owens 2001, Donaghy & Devlin 2002, Dunckley et al. 2003). The main drawback to these is their lack of validity and reliability. As Naysmith opines, 'There is a dearth of reliable, validated tools to sample the experience of the patient and the carer specifically in respect to the work of the specialist palliative care team' (2004:331).
In a review of palliative care services in Northern Ireland, it was stressed that a principle that was held to be of utmost importance by all people involved, was that patients, carers, and their families should themselves be involved in the planning of palliative care. They should also all receive the same high standards of care irrespective of the location and type of care that they were experiencing (Department of Health Social Services Council 1996).
Because of the importance of quality of life to patients who are accessing palliative care services, and their families, the theoretical underpinning of this present research study will be quality of life.
'In healthcare, most researchers and clinicians agree that quality of life (QOL) is related to symptoms, functioning, psychological and social wellbeing' (Kaasa & Loge 2003:11).
Although just about everyone would agree that quality of life is a central concept in palliative care, and despite the widespread use of the term 'quality of life', there is no actual precise common definition that exists today (Kaasa & Loge 2003). There are two general approaches to be used for understanding the concept of quality of life. These range from a broad concept encompassing the answers by the patients to questions such as 'how is your life, everything taken into consideration', and the concept of quality of life as being health orientated and encompassing various aspects of health/healthcare such as symptoms and functioning (Kaasa & Loge 2003). Kaasa & Loge (2003) also point out that these are not mutually exclusive concepts but are, in actual fact, a continuum between two extremes, and that this allows for the flexibility and defining of quality of life.
So what components of life can be used to quantify/qualify the quality of life (which is itself an abstract phenomenon) of individuals. These can include such abstract phenomena as satisfaction, happiness, morale, positive and negative affects, normality, fulfilment of life, possibilities to live a normal life, mental capacity, the ability to think clearly, to love and be loved, to make decisions for oneself, to maintain contact with family and friends, to be able to live at home, and to be physically active (Kaasa & Loge 2003). From this list it is seen that quality of life is strongly linked to normality and that it improves when there is normal function and that it decreases when only a minimum of human needs are met.
All humans have needs - some are very basic, biological, and fundamental, such as the need for nutrition, safety, and shelter. Others are more abstract and related to the concept of normality, such as the need to love and be loved, to have close relationships/friendships, meaningful occupations, independence, self-esteem, and happiness (Maslow 1970). However, these concepts of normality and biological fulfilment are challenged when one has major physical and/or psychological limitations, such as patients requiring palliative care. What appears to be strange is that many patients with major physical and/or psychological limitations may actually report a high degree of overall quality of life (Kaasa & Loge 2003). Calman (1984) described quality of life as the inverse relationship of the difference between an individual's expectations and their perceptions of a given situation, so even if one has major physical and/or psychological limitations, one can still have a good quality of life because the expectations of that individual are lower. Calman (1984) named this the 'gap theory' where the smaller the gap between expectations and actual quality of life, the better is the quality of life.
As can be seen from the paragraphs above, quality of life is bound up with the physical, emotional, social, and psychological needs of individuals/groups. In a systematic review of the literature, Franks et al. (2000) identified three approaches to the assessment of need for palliative care:
1. An epidemiological approach in which mortality in diseases that are likely to benefit from palliative care are examined and then linked to the type and frequency of the problematic symptoms.
2. An evaluation approach in which evidence from patients receiving care is evaluated in order to make an assessment of need.
3. An identification approach in which the unmet needs of those who are not receiving palliative care are identified.
Ingleton et al. (2001), upon reviewing the work by Franks et al. (2000), point out that they concluded that the evidence surrounding the need for palliative care is generally of poor quality and often conflicting. Ingleton et al. (2001) go on the point out that the assessment of needs in palliative care remains an inexact science, and a still evolving field of activity. They also suggest that one possible reason for this lack of good evidence-based needs assessments in palliative care is the difficulty that any practitioners/researchers will face in undertaking them. They mention that such needs assessments are usually commissioned for a particular purpose and often within a limited budget. This conclusion is also backed up by Naysmith (2004:329) in which she states that "in palliative care most of what is done cannot be evidence-based because there is no evidence."
There are also the ethical dilemmas that can arise when implementing certain methods of measuring the quality of care (Cooper & Hewison 2002). Alongside ethical dilemmas are the risks of causing psychological trauma by intrusive questioning. Whilst not insurmountable, the risks of causing harm, as well as the ethical dilemmas involved, go some way to explain the paucity of research and the scarcity of good evidence-based care within the specialty of palliative care in the past (Mino 1999). However, Cooper & Hewison (2002) point out that in recent years several audit tools have been developed that can be used in palliative care settings, and give as an example the Support Team Assessment Scale (Higginson 1993).
Using a combination of quantitative and qualitative research methods, including focused group discussions, individual in-depth guided interviews, literature review, and patient and carer questionnaire booklets, Soothill et al. (2003) identified that the majority of patient-carer pairs expressed the importance of having good relationships with healthcare professionals as well as receiving good quality information as being very important. These were identified as 'universal' needs by Soothill et al. (2003).
The patient and carer questionnaire booklets mentioned above were self-completion instruments and included the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (Aaronson et al. 1993) and a 48 items psychosocial needs inventory (developed by the researchers during the piloting phase of the project).
Soothill et al. (2003) also identified that a minority of patient-carer pairs felt that other types of needs were also important. These were mainly to do with managing daily life, emotions, and social identity. These were identified by the researchers as 'situational' or 'personal' needs. Whilst there was much uniformity between patients and carers as to the perceived needs, there were also discrepancies. When discrepancies did appear, patients were likely to identify more needs as important than did the carers. Carers, on the other hand, reported that they had more unmet needs, and this was suggested by the researchers as reflecting their comparative neglect by health professionals and others involved in palliative care services. The researchers concluded that in the main, the 'universal' needs are being met, whereas the 'situational' and 'personal' are not really being met, particularly for the carers. These unmet needs of the carers include the areas of sexuality, feelings of guilt, opportunities for meeting with others in a similar situation, and dealing with tiredness. Unmet needs of both patients and carers identified were in financial matters and the filling in of forms.
Ingleton et al. (2003) argue that family carers are an integral part of the care of someone requiring palliative care, and that they play a significant and possibly the most important role in enabling patients to make choices about their place of care during the advanced stages of the disease and in the terminal phase. They reinforce observations by Neale (1993) and Hinton (1994) and point out that one of the most common reasons for patients requiring unplanned admissions near the end of life is because of the carers' inability to provide continuing care. In this review of literature, they point out that this appears to be a major need of the carers, but that as with so much work around palliative care, there is insufficient evidence - in this case to draw conclusions about the efficacy of respite care to support carers. Their conclusions actually come from looking at work undertaken with carers of the elderly.
Qualitative research by Ingleton in 1999 explored the views of patients and their carers on one particular palliative care service. She used a combination of methods, including non-participant observation, interviews and a questionnaire. Although higher numbers of patients and carers were involved with the questionnaire and the non-participant observation stages of the study, a total of 9 patients and their carers were involved in the interviews (a satisfactory number for such a qualitative research study). Six of the patients had cancer, one had chronic obstructive pulmonary disease, one had multiple sclerosis, and the ninth had Parkinson's disease. The aims of the study were:
To assess the levels of satisfaction with the palliative care service provision from the patients' and carers' perspectives.
To assess the impact the palliative care service had had in responding to need - again as perceived by the patients and carers involved in the study.
Four themes emerged from this study:
1. being there;
2. the right atmosphere;
3. home from home;
4. we didn't need to ask.
The findings from the study demonstrated that in this particular area of the English Midlands, the patients and their carers viewed that particular palliative care service as being needs-led, prompt, flexible, and tailored to meet their individual needs.
Using a mixture of quantitative and qualitative research methods, Scott et al. (2001) made an analysis of the needs of 24 carers involved with a Macmillan team in the north of England. Because the carers were accessed through the Macmillan nurses, the sample was opportunistic and only included literate carers. This could be a flaw because of the absence of some people who are accessing palliative care services, but who do not fit the criteria for involvement. Also, there is always a danger that the people doing the choosing of the carers may, consciously or subconsciously, filter from the sample those that they deem to be unsuitable or who are likely to be critical of the service. In their report, the authors do acknowledge these potential faults. They conclude that because of these problems and the small sample, then the results cannot be generalised. However, the authors do point out that most studies of family carers are by nature convenience samples because they are typically identified through health or social services. This report, like so many other small-scale, local research studies, does provide pointers about locally-identified needs and also helps to raise issues that could lead to further research and practice in this area of care. From the results, the authors pick out emotional stress as the most important of the carers' needs, with the carers painting a picture of unrelenting demand with no clear end-point. The carers felt that they were involved in damage control and were responding to situations rather than managing them. However, many were resigned to this and none of them anticipated any support from other family members. Many carers felt that they had a real need for some time away from the unrelenting care and the physical and emotional stress involved. Similarly, they also perceived a need for more social support, as they felt that as well as physical and emotional stresses, there was a social element of stress involved with the care that they were giving.
A slightly earlier study (Jarrett et al. 1999) took the form of a qualitative analysis of a subsample of data from a larger investigation. The aim of this study was to identify the expectations as well as the perceptions of patients with advanced cancer and their relatives in relation to the work of a specialist palliative care team. A total of 29 interviews took place (18 patients, 11 relatives), and qualitative analysis of the interview transcripts was undertaken. There were two main themes that came out of the interviews, firstly that the specialist palliative care team was perceived as being there to provide psychosocial services, mainly just as 'someone to talk to' or as providing other forms of support. The second perception of both the patients and their carers was that the specialist palliative care team was expected to have expertise in symptom control, and in particular, in pain management. Within this second theme, there was an expectation amongst the patients that a referral to the specialist palliative care team would be more likely to result in changes to the care that they received. A few patients also believed that the palliative care nurses would provide practical care.
Both the patients and their carers had perceived there to be a split in roles between members of the specialist palliative care team. This was that the doctor would prescribe drugs or introduce medical interventions, whilst nurses were more likely to be viewed as councillors whose role was to listen to patients problems.
A 3-year study by Taylor et al. (2001) in Australia examined the degree of similarities and differences between the perceptions of nurses, patients, and patients' families respectively in relation to the nature and the effects of palliative nursing care. The research methodology used was the qualitative approach of storytelling, and gave opportunities to the nurses, patients, and the families the time to tell their stories, to benefit from their own reflective moments, and to add insights into the interpretation of their perceptions of palliative nursing care. There were a total of 26 participants, 15 nurses, 5 patients, and 6 family members. Each of them was interviewed in order to ascertain their perceptions of what palliative nursing involves and the effect it has or may have, on them.
All three groups agreed on the nature and the effects of the work involved in palliative nursing care. There were two main themes that came out of this research:
1. The personal qualities that nurses have and embody - 'how palliative nurses are’.
2. The activities of palliative nursing care - 'what palliative nurses do’?
The nurses' stories were concerned with the activities of palliative nursing care such as dealing with death, making emotional connections, making contracts for care, acting as an advocate, building interpersonal relationships, being involved in issues, and facilitating breakthroughs, acceptance, and support.
The patients' stories gave emphasis equally to the personal qualities and the care-giving activities of the palliative care nurses. Personal qualities included affirming people's experiences, being nice, caring, keeping company, connecting, having human sensitivity, making people feel special, reassuring and comforting, showing respect, supporting and taking time to be present and caring. The nursing activities that were perceived to be effective in palliative care included adequate and meaningful communications, advocacy, attention, basic care, empowerment, giving good physical care, giving information, keeping promises, and monitoring patient responses to palliative care.
The carers' stories brought out the same responses as the patients.
The major difference in the stories was the relative emphasis on the personal qualities that palliative care nurses bring to their work and activities in which they engage. The nurses were primarily emphasising their work activities, whereas the patients and their relatives give equal emphasis to the nurses' qualities and activities. The researchers conclude that the difference may occur because nurses are unwilling to speak about personal qualities, assuming that what they do and how they do it imply certain personal qualities that they bring to their work.
Seymour et al. (2003) identified four themes that emerged from a synthesis of three evaluated studies of palliative care services in the UK, where they attempted to ascertain the patients' reported expectations and experiences of specialist care. From secondary qualitative data analysis on interview data gathered from 37 patients, the four themes that were identified were:
1. knowledge and information about services;
2. meeting practical and psychosocial needs;
3. lack of control;
4. family atmosphere.
The first two themes are common throughout just about all literature; however numbers 3 and 4 are not identified in much of the literature. This may be because this was a much larger survey than almost all the others, and it looked at services in three areas of the UK.
All the literature is agreed upon one thing, that it is not just what the palliative care team do, but how they do it. As Taylor et al. (2001) conclude, it is not just enough for the nurses to do the work, they also need to become aware of the possibility that 'being' with patients and families is just as important. Craven (2000) stresses the importance of the necessary communication skills, and points out that effective communication with patients, their families, and others involved in their care is one of the essential components in the provision of effective palliative care. But it is not just a matter of giving information, because the patients in the families desire more than just information in their communications with the palliative care team. Effective communication involves listening, commitment, and empathetic understanding, as well as the giving of relevant, understandable and appropriate information.
In 2001, a research study was undertaken that looked at the perceptions of cancer and cancer services held by members of the Asian community in Luton (Randhawa & Owens 2001). This study came to the conclusion that, because of the limited information relating to cancer, then levels of awareness about cancer and related issues were limited within this ethnic grouping. This in turn led to the South Asian community generally perceiving cancer as an incurable disease because this lack of information meant that members of these communities often only access the appropriate services at a late stage in the disease. This perception of what was available did, however, vary with age, in that the younger members of the South Asian community in Luton were more aware of what was available and when.
In their study, Randhawa et al. (2003) found that, despite the above, the palliative care services to these ethnic groups in Luton were generally valued and seen as being very effective. However, there were concerns over the need to improve communication between patients and service providers.
In this study by Randhawa et al. (2003), the sample was composed of people who did not have cancer, and some did not even know people with cancer, rather than, as with the present proposed research, people with cancer and their carers, as was noted by Randhawa & Owens (2004).
Nevertheless, the research by Randhawa et al. (2003) is important in providing a starting point for the perceptions that are held by members of the South Asian community, and the present proposed research will build on the findings of this previous study, particularly when comparing the perceived needs of adults with cancer and their families from different ethnic communities within South Bedfordshire.
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