RESEARCH
ARTICLE

This thesis was added
14 July 2002

The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life

A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University

by Christine Hopkins - 1998

Chapter Ten: Implications for Nursing.

This study has raised a number of concerns that have implications for nursing. Of primary note was the absence of nurses as therapeutic practitioners in the care of those with arachnoiditis, particularly in relation to the management of chronic nonmalignant pain. Of equal concern was the apparent lack of any mentioned advocacy role taken by nurses in relation to participants’ needs. While a lack of diagnosis and/or a lack of readily available information about arachnoiditis may have created difficulties for nurses working with study participants, it could also be argued that an effective nursing presence is inherent in the choice of theoretical framework on which practice is based. An entropic view, which sees conditions such as arachnoiditis as incurable and its symptoms as intractable, leaves nurses with little to offer, leading to therapeutic and professional burnout (Kodiath, 1991). By contrast, a negentropic view, which sees people as individuals capable of making numerous choices in the arranging of their environment and lives, provides nurses with possibilities for developing a researched-based foundation of knowledge that can expand the choices available.

The absence of nurses in therapeutic positions in relation to the care of those with arachnoiditis is, as noted earlier, of major concern and is contrary to the view expressed in the recent Taskforce on Nursing (Report, 1998) that nurses are a continuing presence across the whole spectrum of a client’s care. Participants in this study did not have a positive image of services nurses could offer. Practice nurses were not mentioned as offering support or advocacy in the general medical practices participants visited. Nurses at hospital venues and clinics did not have an identified nursing role in symptom management that was obvious to participants, instead appearing to function as tacit supporters for the hospital medical system. These experiences position the nurse very much alongside medical personnel as assistants in diagnostic, consultative and treatment procedures, a positioning noted by Chinn (1996) as resulting from nurses continuing to place themselves within a frame of reference oriented toward cure. In this entropic positioning, once a cure is no longer considered possible, or effective treatment is not available, nurses do not appear to have an obvious professional role in the lives of those who must continue to live with seriously incapacitating symptoms, such as the nonmalignant pain associated with arachnoiditis.

Currently, nursing in New Zealand is not well positioned as a profession to offer independent and valued therapeutic services to those with nonmalignant chronic pain. The hegemonic social and political processes shaping the development of health care services in New Zealand have side-lined nursing as a science and an art in its own right, not only for those with arachnoiditis, but for many people with health concerns. The focus is currently on medical care, commonly called primary health care, from GP’s, who serve as the first entry point to the health system, whether public or private. The Taskforce on Nursing (Report, 1998) delineates the various changes and the barriers to developing innovative practice strategies and provides information on which nurses can base their efforts to create new therapeutic options.

If nurses are to provide an independent, useful service to those with chronic pain, there is a need to carefully consider just what form that service might take. Participants in this study voiced a desire for health care professionals to believe them, to listen to them, to be knowledgeable about their condition, to provide ongoing support and to explore further avenues for symptom management, most particularly, of their pain. There are indications (Vallerand, 1991; Ferrell, McCaffery & Rhiner, 1992; McCaffery & Ferrell, 1996; Wenley, 1998) that current nursing practice often fails to meet peoples’ need for pain relief. While individual nurses may well have provided aspects of such care to participants in this study, this was not done in a manner that created an impression in participants’ minds that nurses were independent and useful health professionals who had skills and knowledge to offer. Advocating for effective pain management, including the use of pharmaceutically-based options and working with people to ensure the most effective management of that medication, is a recognised role in the work of acute pain and oncology nurse specialists. The development of such nurse specialists in community based nonmalignant chronic pain management programmes appears to be the logical next step.

Supporting people in their search for adequate symptom management is an aspect of nursing advocacy. ‘Advocacy’ has become a catchword in Western nursing (Johnstone, 1989) and an advocacy role has been seen as part of the daily work of the expert nurse (Segesten, 1993). New Zealand has had, since 1996, an independent nation-wide advocacy service, headed by the Health and Disability Commissioner. Its function is to empower people with consumer dissatisfactions and complaints regarding health services, rather than replace nurses in the on the spot advocacy that would meet the needs indicated by participants’ experiences within the health services. These needs included information that might have ensured informed consent, support during procedures, and support in their search for adequate pain management. The findings of this study indicate that nurses, rather than advocating for their patients in support of voluntariness in relation to informed consent (Etchells, Sharpe, Dykeman, Meslin & Singer, 1996), instead appear to have sought to support medical opinions and enhance efficiency. Whether this is because those nurses felt vulnerable to intimidation from medical staff, a point noted after the release of the Report into the Cervical Cancer Inquiry in 1988 (Johnstone, 1989), or were trying to avoid interpersonal conflicts between themselves and physicians, is unclear, but these are issues that had important consequences for participants. New consideration of the advocacy role of nurses seems timely, particularly of processes that empower nurses to avoid similar problems in future.

The new legal requirements demanding informed consent (Health and Disability Code, 1996) constitute an important aspect of any such consideration. Nurses who assist with medical therapies and tests, or work with people about to undergo such procedures need to clarify their role in the provision of supplementary information over and above that on the official consent forms, both in response to people’s direct questions and to people who ask no questions. As regards arachnoiditis, this is particularly so in helping people with back injuries to make an informed choice between procedures, such as MRI or myelography. A number of the factors which may have been associated with the development of arachnoiditis in study participants have now been eliminated. Oil based dyes are no longer available, having been replaced with purportedly safer water-soluble options. Myelography itself, especially just prior to surgery, is used much less commonly. However, myelograms are still performed and fully informed consent would require disclosure of the comparative safety and excellence of MRI scanning as an option (Gundry & Fritts, 1997). The role of nurses in this process is as yet unclear.

There is also a need for nurses to give serious consideration to where their role as providers of nursing services links into other community based organisations. Service providers, such as the case managers employed by the ACC, come in regular contact with those with chronic pain, including arachnoiditis sufferers, and important decisions about clients future lives are partly based on case manager reports. The conservative treatment of acute back injuries has changed, from the prolonged bedrest spoken of by some participants, to early mobilisation. A system of ‘red and yellow flags’ indicating high physical risk factors and psychosocial risk factors (Kendall, Linton & Main, 1997) has been developed and is being used by ACC in New Zealand to instigate early management targeted toward preventing chronic back pain and disability from developing. As yet, there seems to be no specifically recognised role for nurses in this protocol.

For those with disabilities linked to arachnoiditis who are not on ACC, needs assessors within the new Health and Disability Services structure perform a similar function to ACC case managers, assessing individual’s eligibility for Health Funding Authority services, such as home help and personal care. These case managers and assessors also assess for and coordinate services provided by health professionals such as physiotherapy assessment, occupational therapy assessment, and complex assessments involving various specialists for those with long term disabilities, including those arising from pain. Some case managers and assessors are nurses but they have no direct therapeutic role in this position. They could, however, refer people to specialist nursing services. Assessment services are required to inform the funding authority of service gaps in meeting people’s needs. This creates an opportunity for nurses to create specialised services targeted to meeting the wider needs of chronic pain management in the same way that nurses have led the way in developing care for, and becoming accepted experts in, cancer and acute pain management (McCaffery, 1990).

Pain management emerged in this study as an area of prime concern, and therefore, a most useful focus for new nursing activities. While there is increased interest in the management of chronic nonmalignant pain from a nursing perspective (McCaffery & Beebe, 1989; Kodiath, 1991; Watt-Watson & Donovan, 1992; Carroll & Bowsher, 1993; Hitchcock, et al., 1993; Matas, 1997), management strategies for central pain are less evident. Central pain affects up to 30% of people with lesions of the cord and its medical management remains difficult (Tasker, et al., 1992).

The recognition that there is a great similarity between participant’s symptoms and the clinical features related to spinal cord injury (Tasker, et al., 1992) may prove significant as a focus for nursing, since it obviates the necessity for a precise diagnosis of a disease before nursing therapies can be utilised. In giving consideration to changes in specific areas of the body, field pattern appraisal and ensuing plans for therapeutic options are of a greater degree of relevance to nursing because they centre on the symptoms within the person, instead of on the disease. Understanding the physiological processes that may be linked to those symptoms provides an important extra understanding to expectations regarding various therapeutic options.

Pain management concerns for those with arachnoiditis raise ethical issues relevant to nursing. Those who used the term ‘excruciating’ to describe their pain have used a term that denotes immense suffering (Champagne & Weise, 1994). Health care professionals have not always seen it as their role to be concerned about pain (Somerville, 1994). Bourne (1990) notes that in many instances, doctors, relatives and friends fail to realise the pain of arachnoiditis can be as bad as that of cancer but without the prospect of death as a release. It is considered unethical to let cancer patients live out their life in unrelieved pain (Cain & Hammes, 1994; Somerville, 1994), but similar ethical and therapeutic issues have only relatively recently been addressed for those with nonmalignant chronic pain, particularly in regard to the use of opiod medications (McCaffery & Beebe, 1989; Vallerand, 1991; Hitchcock, et al., 1994; Large & Schug, 1995). Nurses, working closely with those with chronic pain, can be prime instigators in advocating the use of effective analgesia, including opiods.

Cancer pain is now commonly treated with opiods and there is a recognised need to educate those, including nurses, with unjustified concerns about the risks in using opiods for long periods in the community (Ferrell, McCaffery & Rhiner, 1992; McCaffery & Ferrell, 1996). For those with arachnoiditis and no expectation of death in the near future, misunderstandings concerning the dangers of addiction may be preventing access to opiods. Opiophobia, a customary underutilisation of opiod analgesics, is thought to be as common in New Zealand (Wenley, 1998) as in other countries in the world. Guidelines for opiod use have been developed for clinical practice in New Zealand and nurses can support those with arachnoiditis to find out if they fit the criteria.

However, the value of such opiod therapy for those with arachnoiditis also needs to be specifically evaluated. Meyerson (1990) reports on a study in which he found that those with chronic, neuropathic pain were resistant to opiods. Large and Schug (1995) raise issues centred on whether opiods liberate and extend autonomy or create dependency handicaps in already limited lives. There is a need for further nursing research to see if opiods work effectively because of their action on other types of pain than that of central origin. Lowering the overall pain burden sufficiently to enable the person a better ability to participate in life may be sufficient justification for the use of opiods even if there is little effect on the central pain. Similarly, peripherally active substances such as carbamazepine and tricyclic antidepressants, particularly Amitriptyline, were only occasionally effective (ibid). Nursing research looking at factors indicating when such medications are effective, and recognising when they are not, may also be required.

As well as pharmaceutical products, there are a number of other non-pharmacological techniques which are recognised for their effectiveness in pain management. Unfortunately, the lack of mention by participants of any nursing input using these methods for their pain management, indicates a disparity between nursing practice and educational claims that nurses are uniquely prepared for the effective use of non-pharmacological pain management technique (Edgar & Smith-Hanrahan, 1992). These authors indicate that such techniques are used less than 25% of the time. Nonetheless, they see nurses as having a responsibility to try various therapies, such as cryotherapy, superficial heat application, massage, acupressure, transcutaneous nerve stimulation, relaxation cognitive strategies, imagery, music and distraction and to incorporate them into people’s individual pain treatment programmes if successful (Edgar & Smith-Hanrahan, 1992). However, it is already recognised that physiotherapy and TENS are not effective therapies for arachnoiditis (Bourne, 1990), indicating that the neuropathophysiological aspects of the arachnoiditis experience may require research into the effectiveness of all these strategies specifically for those with arachnoiditis.

A choice of therapeutic options is meaningless if an effective service to provide those options does not exist. Successful use of these therapies in practice can be achieved either by nurses gaining specialist knowledge for themselves or by building networks that link people with other specialists who can perform them safely and knowledgeably. Jacox (1994) makes the point that nurses, who provided leadership in studying children’s pain, need to be more aggressive in insisting on their ability to practice professional nursing, and more assertive and creative in trying some of the numerous interventions suggested in nursing research literature for those with nonmalignant chronic pain. The lack of perfect answers available for those with arachnoiditis, suggests a need for nurses to innovatively heed what Donovan (quoted in Champagne & Weise, 1994) described as ‘successive approximation’, that is, to try various therapies, evaluate their effectiveness, revise the plan if necessary, and try again.

To meet the needs of people with arachnoiditis, nurses can chose between two perspectives. These perspectives arise from Rogers’ (1970) recognition that body image and human field image provide two different views of persons with disabilities which lead to two markedly different approaches to practice. The body image perspective sees nursing focusing primarily on dysfunction of the parts. The human field image perspective focuses on the potentials of the person. By using a body image perspective, participants lives can be viewed in entropic fashion as a downward spiral of unmanageable symptoms, psychological dysfunction, broken dreams, shattered careers, family tensions and marriage breakups. Not only is their disease and, therefore, they themselves, incurable but their pain is intractable and prevents their participation in the activities of normal life. As a result, their lives have ground to a halt.

It is possible to view the study findings in this way, and to find that entropic perspective supported by the literature review. However, a deeper analysis of the study data revealed an embryonic negentropic perspective on which to build nursing interactions. Integral with pain and hopelessness in participants’ lives have been bright areas of change. New relationships have been forged. Two have started new, part-time jobs. The publicity in 1995 has been a spur to self discovery and to new outlooks on life. There has been an immense sense of integrality and belonging that has come about through joining the support groups, and of finding others who knew absolutely and without question what they were talking about when they discussed their symptoms. This research illustrates, within itself, the integrality of the researcher and participants as a part of that forward motion, that uncovering of new possibilities. The national support group (ASAMS) is eager to advance knowledge of pain management and plans are being made for a conference in 1999, which will include a focus on central pain syndromes (personal communication with ASAMS patron, Oct., 1998).

The choice of perspective thus has crucial implications for nurses, because choosing to work within an entropic, body image perspective focusing on symptoms appears to leave little in the way of therapeutic options. By contrast, practice from within a Rogerian perspective requires that participants be seen, not as incurable, but as capable of infinite possibilities. Identifying barriers in the patterns of relationships between events and experiences, as seen through a negentropic, human field image perspective, gives an ordering of knowledge (Rogers, 1970). This knowledge allows a recognition of new possibilities in care options and an indication of areas where future research can be done to enhance the pool of knowledge from which nurses and those with arachnoiditis can select potentially helpful options. All the currently available information on arachnoiditis and, since it is the predominant symptom of concern to those with arachnoiditis, information about chronic nonmalignant pain and central pain, can be reframed in terms of potentials. The nurse and the person can, by focusing on those potentials, work together to find helpful ways to relieve symptoms, enhance physical and social activity, maintain wellness at as high a level as possible and generally seek to find ways to enjoy life to the maximum degree possible. Individuals may achieve some of these goals by themselves, but an experienced nurse can facilitate the search by bringing a wealth of expert knowledge to the encounter.

The expertise required to work as a nurse in practice based on a Rogerian framework is not easily gained in New Zealand. The value of such innovative practice is already evident in the work done by nurses working in a Rogerian framework in the United States, both in private practice and in hospital settings. There are increasing numbers of practice-based reports in the literature that could serve as guides. Pain management strategies using creative approaches based on a Rogerian framework have been developed and utilised in practice by various practitioners. In particular, Cowling’s (1990) experience of working with a person with phantom limb pain, also a central pain phenomenon, indicates the possible usefulness of the approach in those with arachnoiditis. Kodiath (1991) offers a Rogerian view of chronic pain management and Garon (1991) has developed a model for the delivery of pain management care in the community based on a Rogerian framework. Matas (1996) has used Rogerian science to explore the nature of chronic pain as a pattern manifestation. Other useful literature that could be adapted to pain management includes nurses’ experiences in instituting a Rogerian nursing perspective in a service organisation (Caroselli, 1994), developing pattern appraisal as a guide to nursing care for children with heart variations (Morwessel, 1994), using various unitary human field practice modalities (Boguslawski, 1990), and developing private nursing practice settings (Cowling, 1990; Barrett, 1990).

People requiring a nursing service should be able to influence the type of service offered. The importance of a person’s ability to participate knowingly in change was identified by Rogers in 1970 and developed by Barrett (1986), who defined the person’s capacity to participate in the nature of change by repatterning their human and environmental fields as power. This study indicates that a person’s inability to participate knowingly in their own life changes and to create their own new realities may be the true nature of disability. Power, as the capacity to knowingly participate in change and to make choices, is a reflection of the principle of helicy and is integral to the mutual process of the human-environmental field (Barrett, 1990). Pain and fatigue disempower many of the participants, preventing them from acting intentionally, allowing fewer possible choices and increasing feelings of inability to create change. The lack of harmony participants feel within their environment, and their sense of not being fully part of life in their communities, adds to their sense of powerlessness. Essential to an ability to utilise that power is awareness of the situation, knowledge of the choices available, freedom to act intentionally and an involvement in creating change. These abilities also meet the enablement and empowerment criteria set in place in New Zealand by the framework for health and disability service provision (New Zealand Framework, 1994).

The study results revealed that participants had very little of any of these attributes of power until the news media presentations in 1995. Since that time, a number of events have occurred that have altered the environment within which they live. They have an increased awareness of the situation and also of the choices that should have been given to them and that are available to them now. Legal changes have empowered them with more freedom to act intentionally (Health and Disability Code, 1996), although monetary and health system issues of service availability have counter-balanced some of these apparent gains. The most limiting factor in making choices is the lack of availability of services other than those within the medical model. Those with arachnoiditis, working through their support organisation, ASAMS, are seeking to increase those options. However, in New Zealand, almost all of the therapeutic options that are consistent with Rogerian thinking are offered by wellness practitioners other than nurses.

One option for New Zealand nurses, in keeping with Rogers (1990) view that health services are properly community based, is the development of autonomous, community based nursing services funded by the Health Funding Authority. In the United States, nurses are already entering an increasingly entrepreneurial world in practices that are primarily characterised by non-invasive modalities that are based in nursing science, not medicine. Ministry of Health officials (personal communications, Sept., 1998) confirm that there are funding openings available for innovative community based services in New Zealand, and the Ministerial Taskforce on Nursing (Report, 1998) outlines a number of potential strategies by which nurses can build the structures through which practice can evolve to maximises health in difficult circumstances.

Limitations of the study

The limitations of this study were shaped by the broad sweep of information sought in a two hour interview period. While this strategy allowed a wide-ranging description of the patterns of symptoms and experiences to be revealed, it also meant that any one aspect of the overall pattern has not been explored and described to its full potential. The symptoms and experiences described by participants would all bear further exploration. Such a process would occur during individual pattern appraisal in therapeutic practice, in which the uniqueness of each individual participant’s personal pattern would emerge in greater detail.

A secondary limitation was the difficulties for the researcher in using a Rogerian framework with limited practical experience in its application. However, the potentials inherent in using a negentropic framework were felt to outweigh the disadvantages of an inadvertent lack of consistency in theoretical concept application.

Further research

An exploratory descriptive study provides an introduction to an area of concern about which little is known. From that information, further research can be undertaken. The primary area requiring further research was revealed by this study is for pain management. The multifaceted nature of the pain experience, its effect on the daily life of those who experience it and their families, and the lack of effectiveness of pharmaceutical preparations, create many possibilities for nursing research into chronic nonmalignant pain management strategies. Literature providing information on the benefits of a negentropic Rogerian approach indicates potential benefits to those with such pain. Exploration into nursing strategies that would assist in the development of individual’s potentials, rather than into their losses, would also be of use. Theoretical perspectives developed from a Rogerian framework, such as Barrett’s theory of power as the capacity to knowingly participate in change ( Barrett, 1986) may guide such research.