Arachnoiditis

Introduction

The focus of this article is the effect of chronic illness on individuals and on families. Diamond and Jones (1983), as cited in Ioane (1996), define a chronic illness as a condition that is either incurable or has residual features that disable the sufferer in the long term.

I met my client while working on a medical ward during my third year. Rosemary (pseudonym) is 73 years old. She has a complex medical history including congestive heart failure (CHF) right-sided, chronic obstructive respiratory disease (CORD) CO2 retainer, bronchietasis, chronic back pain clue to osteoarthritis, left lower lobectomy and a mastectomy.

Rosemary, a retired health professional, immigrated to New Zealand to join family members who had settled here.

I have chosen to focus on CHF. Rosemary was diagnosed as having CHF 18 months before 1 met her, at which time she had had CORD for approximately four years. Rosemary's chronic back pain has been progressive over a number of years due to her osteoarthritis.

Rosemary's CHF condition has deteriorated to the point where she requires hospitalisation to improve, or at least stabilise, her current health status. Once this has been achieved, Rosemary will continue to live independently in her own retirement village unit.

Lived experience and stage of illness

Initially, Rosemary found living with CHF very frustrating, especially given her other chronic health issues. Rosemary stated, 'It was one more nail in my coffin.' However, with the support of her family and friends, Rosemary has learnt to adapt to the deterioration in her health. Rosemary's concerns focus on her family - the impact her ill health has on her son and daughter and their respective families - rather than on herself. Rosemary enjoyed talking about her family and was quite happy to share the story of her illness with me.

Rosemary says she feels 'like a burden at times' to her family, especially when she is admitted to hospital. She acknowledges though that her family have never said or done anything to confirm this feeling and realises that it is mostly her own frustration.

Bernstein-Hyman and Corbin (2001) designed a trajectory phase map to help assess a patient's current health status. Based on this map, Rosemary is in acute phase of her illness. The nursing care plan was to provide pain relief, to provide respiratory assistance as required and to decrease fluid overload until she had restablised and regained her independence.

I discussed with Rosemary how she perceived her health status changing post acute admission. Did she believe it would improve or continue to deteriorate? Rosemary understands her illness enough to acknowledge that she is perhaps on a downward slide though not exactly 'knocking on heaven's gate'. She knew that she would not return to the state of health she enjoyed prior to admission. She anticipates approximately another 8-12 months of life.

Given Rosemary's other chronic health issues, this is probably a reasonable assumption. Rosemary makes this assertion through her in-depth health knowledge. Research indicates that when CHF coexists with other chronic health conditions, life expectancy is reduced (Cowie & Zaphiriou, 2002). I have to say that should I ever be in the same position Rosemary is in, I hope I would be as pragmatic as Rosemary.

Rosemary says she has lived her life to the 'fullest' and her only regret is that she probably will not live to see her grandson graduate from university. She has endeavoured to make this path as easy as possible for her son and daughter and their families.

Quality of life

Social and economic domain

Rosemary stated she 'at times feels a little cut off socially' because most of her friends are also elderly and have their own health issues. They are not able to assist her with the portable oxygen unit she requires due to her CORD. This then limits her ability to join them in, for example, a shopping expedition. Rosemary has domiciliary oxygen in her unit. She still manages to attend church on a monthly basis, but she used to attend weekly. Friends from church are regular visitors, and she maintains frequent contact with friends and relations in her home country via email and letters, though she is finding this a 'tiresome task'.

People with chronic health issues can develop a life pattern of isolation. This limits their opportunities to express their concerns surrounding their condition, and leads to difficulties relating to others (Anderson & McFarlane, 2000).

Rosemary suffered another loss this year: her drivers licence. She hadn't driven for two years but had clung to this symbol of freedom as long as possible. Rosemary stated, 'It was inevitable. Driving even short distances not only was becoming increasingly tiring but unsafe.' This loss of independence means Rosemary must rely more on others for assistance with shopping. This can cause feelings of isolation (Martensson, Karlsson & Fridlund, 1998).

Loss of independence is a major concern to those who live with chronic illness. Health professionals need to ensure that the patient (or client) is fully informed and involved in all aspects of their care and treatment (Paterson, 2001). I asked Rosemary if she felt she played an actual role in her care. Rosemary stated that she 'felt that the doctors, nurses, physiotherapists etc were very good, explained everything to me. Even though I'm a retired health professional, it was all explained in layman's terms.' Paterson (2001) states, 'Time with health care professionals is a critical factor in clients being able to assume an active role in decision-making about their care because such a collaborative relationship with health care professionals requires sufficient time to openly explore the clients concerns and ideas' (p. 579).

Rosemary took care to plan for her retirement. However, her deteriorating health and the need to move into the retirement village was not taken into account and hence there is not a lot to spare. Rosemary receives both a government subsidy and a small overseas pension, which covers the cost of her unit, and an additional clothing grant of $200.00 per annum, which she receives from the government. Rosemary's medications are all fully government funded, so this cost is one that she currently does not have.

The high cost of health care, combined with reduced government funding, means health care for the aged may be marginalised (Edelman & Mandle, 2002). By 2050, 35 per cent of the New Zealand population will be aged, but few resources are being devoted to researching and planning for their needs (Austin, 1999).

Sociological imagination

Historically it was uncommon for people with Rosemary's condition to live to the age she currently is. Previously chronic conditions were fatal at a much earlier point in the illness (Germov, 1998; Lubkin 6k Larsen, 2002). Better treatment has lead to an increase in the number of older adults who have chronic conditions.

Rosemary has lived with chronic illness of one kind or another for several years. She is aware that if she were living in an earlier time, for example, 50 years ago, her quality of life experience would be vastly different. The treatment of her chronic conditions has advanced dramatically in the last 20 years, related to the development of more sophisticated drugs and drug regimes. Studies of CHF have shown that the six-year mortality rate is 80 per cent for men and 65 per cent for women, with men being diagnosed at an earlier age than women (Martensson, Karlsson & Fridlund, 1998; Stewart & Horowitz, 2002).

Research shows that there are changes in perception of health in people with congestive heart failure, and Rosemary is no different. Rosemary had until recently believed that it was still her role to be the homemaker, even though she lives on her own in her unit and has no one else to care for. Rosemary stated, 'Attitudes have not changed and it is still believed that even though a chronic condition may affect how you go about the activities of daily living, as a female you are expected to maintain a certain level of activity and to just get on with it.'

As Rosemary's health has deteriorated, the family roles have shifted and changed. Rosemary is now being cared for by her family when, as a mother, she had cared for her children. This shift in roles has been hard for Rosemary to adjust to. Rosemary has found it very difficult to acknowledge and accept that she can no longer be as independent as she would like to be.

Rosemary understands, more so than most due to her health care background, that she has the power to control her care to ensure that her CHF does not overtake all the other aspects of her life. This knowledge is important, as studies have shown that depression in regard to inability to cope with activities of daily living is a factor in maintaining control of CHF and any other chronic condition (Bennett, Baker & Hustler, 1998).

CHF has altered Rosemary's life a little, but as she already had coexisting chronic conditions the impact has not been as dramatic as it could have been.

Rosemary has a support network comprising her family, friends and her local church group, as well as a variety of support groups, including Arachnoiditis Support and Monitoring Society (ASAMS) and Chronic Back Pain Support Group. She participates in these groups by exchanging emails, letters and telephone calls. Her family visit frequently, taking her out for lunch when she feels physically able. She has at times considered becoming a member of Grey Power, a group of older adults who lobby government for better health services to be provided for them.

As nurses we need to be able to accept cultural diversity and adopt a holistic approach to health. This means that nurses are patient advocates. We are a source of reference for our elderly clients, assisting or teaching them to access appropriate services, putting them in contact with communitybased organisations and, if required, helping them seek out additional financial assistance (Edelman & Mandle, 1998).

It is possible to argue that universal health care insurance should be compulsory so all can gain access to medical and hospital services and that this would fundamentally be the best option. Generally, it is thought that health care should be available to all who need it, but it is the diversity of differing opinions that makes the issue of availability of health care for all difficult to resolve (Germov, 1998).

Rosemary receives all the financial funding she is eligible for at this time, along with other physical assistance that is available to her in terms of support services. She has access to the medical care she requires now because, during her years of chronic illness, she has linked to all the various sources of assistance available, but I believe longevity of illness should not be a determinant of quality of care.

Levels of prevention

'Prevention means anticipating and averting problems or discovering them as early as possible in order to minimise possible disability and impairment' (Spradley & Allender, 1996, p. 14). It is practised on three levels: primary, secondary and tertiary.

In this article I have focused on the third level of prevention: tertiary. The focus of tertiary prevention is rehabilitating individuals to a maximum level of functionality after an illness. 'Tertiary prevention occurs when a defect or disability is permanent or irreversible' (Edelman & Mandle, 1998, p. 19). Care at this level is aimed at assisting the individual to achieve the best level of functioning possible within the limits of their condition. The aim is to reduce the occurrence of further problems or to decrease the rate of disease progression so that the patient (or client) can return to a point of wellness where they have an acceptable quality of life. 'Followup of client and family after the intensive phase of rehabilitation is critical to maintain the health level or benefits achieved during the initial phase' (Pender & Pender, 1987, p. 41).

This may involve educating individuals about ways to manage living with a chronic illness, or promoting a dignified and pain-free death if an illness is terminal. Activities focus on the individual; however, they may be extended to include families or significant others.

The scope of nursing practice within the area of rehabilitation is wide. It ranges over communicator, comforter, counsellor, educator, teacher and rehabilitator. All these roles are important in nursing practice (Potter & Perry, 1997). Nurses have to take on various roles. Nurses are educational resources for the full range of socio-economic groups and geographical locations in New Zealand society.

The promotion of health in people with chronic illness could sound like a task with little or no return. But, the improvements in quality of life that can be made can make it very worthwhile. Given that Rosemary suffers from CHF, and like most sufferers of CHF is an older adult, the health promotion possibilities are extensive (Watson & Wilkinson, 2001).

The several potential roles a nurse may have can be looked at through my case study. One role a nurse may have is the delivery of service to a client. This requires a competent level of clinical nursing skill and the knowledge to educate, counsel and support the client.

Another role, that of case manager, is aimed at facilitating and coordinating the organisation of care. The nurse advocates for the client, so that the client receives the appropriate service. In Rosemary's case, the actual scope of nursing practice was centred in tertiary prevention. Rosemary's age, degenerative changes, pharmaceutical regime and medical diagnosis reduced her ability to perform everyday tasks. The objective for the nurse in this case was centred on Rosemary's goal to remain as independent as possible, and for Rosemary to remain pain free. The nurse organised resources for Rosemary, meals provided from the retirement village and home help for showers and other daily activities. Mobility aids were also organised, for example, a walking frame. It was arranged that the registered nurse at the village would visit daily for a period of time to evaluate how Rosemary was coping and to assess her level of independence. These visits also enable continuing evaluation of Rosemary's need for assistance in other areas.

The health of the older person is most effectively promoted through a combination of health education, ongoing assessment and efficient and effective quality of care. Over time this combination can improve or maintain an older person's level of health. Nurses are in a position to reduce risk of illness in the elderly by encouraging changes in lifestyle and by offering health care activities such as health checks, immunisations and preventative screening (Watson & Wilkinson, 2001).

Conclusion

In the process of researching this article, I have done a lot of reading and had many and varied discussions with a variety of health professionals. Early in the process I spent numerous hours with Rosemary discussing her view of CHF as a chronic condition and its impact upon her and her family.

Living with chronic conditions places a huge strain on an individual and also on the family as roles change and shift. The carers become the cared for, often having to rely on others for transport and assistance with shopping. To admit that they are now unable to complete habitual tasks without assistance of some sort is extremely frustrating for those chronically afflicted.

The role of the nurse caring for an elderly person with a chronic illness and multiple medical conditions is certainly very challenging. Communication is extremely important. Good communication builds good relationships between nurse and patient and other health professionals. Listening to and liaising closely with both the client and other health professionals will assist in ensuring access to appropriate services. The aim of assessment, planning and implementation of client-based care is to ensure good quality care is delivered to the patient,

I have learnt that not all patients understand the reasons for some basic processes and procedures that we, as nurses, follow. So, we need to remember to involve the patient at all levels of their care. This is something that can be forgotten when we are busy with the practicalities of nursing.

I am thankful to Rosemary for allowing me this opportunity to visit her life, gain greater insight about chronicity and its effects, and for the chance to see how it is through her eyes.

References

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Judith Arnold (RCpN, BN) completed this article as a third-year mature nursing student at Whitireia Community Polytechnic. Currently Judith is employed by Capital & Coast District Health Board Mental Health Services and is enrolled in the Graduate Diploma in Psychiatric Mental Health Nursing.

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