Exciting developments in technology and professional skills have led to an expansion in services and a widening policy to "dialysis as a right". But it has also led to an every increasing population of older and more dependent dialysis patients.

This increase in the elderly dialysis population means that many patients are not awaiting transplantation, but will stay on dialysis for life. Inevitably, such patients face physical, social, practical and psychological problems as their health deteriorates.

Being a long-term dialysis patient does not necessarily correlate with chronological age, length of time on dialysis, or the ability to cope physically and psychologically, but they often have three main features in common:

		considerable experience of dialysis;
		a remote or even non-existent prospect of transplantation; and
		need to accept that dialysis will be for life.

Patient and staff responses
In 1968, Kaplan-de-Nour and Czackes recognised that patient responses to haemodialysis raised intriguing psychological problems, and the way in which staff responded to these could affect outcomes. When staff provide a high level of professional skill and care, they have high expectations for the quality of life of their patients. But these expectations may, in practice, be frustrated by the true nature of a patient's ability to function.

Here, we need to distinguish between disease and illness. Disease has an organic basis, with signs and symptoms, and a predictable progress. Illness, however, is the patient's total experience of the disease, and is individual and subjective, based on the patient's experience, beliefs and their individual social context.

The long-term dialysis patient has amassed a wealth of experience, made comparisons with other patients, and has developed personal health beliefs, before even reaching this stage of their patient career.

Personal perceptions
On the basis of their own perceptions of their illness, a patient will make their own assessment of their personal quality of life [Table 1]. Objective measures, such as health status, personality, ability to function and the ability to maintain social roles and use support systems, may all change over time. Subjective factors, including life satisfaction, acceptance, and adjustment, may be expressed by patients, or assumed by staff.

We need to decide how to deal with these perceived problems, which may be adaptive or mal-adaptive, through teaching coping strategies.
Each unique individual needs to develop a personal perception of their illness and the problems that they perceive to be arising from it [Table 2]. We need to decide how to deal with these perceived problems though teaching coping strategies, which may be adaptive, or maladaptive. [Table 3] The process chosen will shape the response of each patient.

Weinman proposed a cognitive model of illness, which helps us to understand the dynamic process that shapes a patient's response to their disease.

And, as Garry Welch points out, such information on a patient's perceptions of their quality of life may provide us with important clues to psychosocial aspects of coping.

Insight into the dynamic processes involved in adaptation may help patients to cope with the problems of chronic disease. Ferrans said in her 1996 study that: "The true quality of life needs to be defined in terms of the patient's unique experience of life."

Case study 1: moving from maladaptive to adaptive
A gentleman, aged 87, who had spent eight years on haemodialysis, was suffering deteriorating health, poor vision and decreasing mobility, which contributed to a diminishing functional ability and a reduced social role in caring for a disabled wife.
With his independent personality, he found it difficult to accept change, as he became more frail and exhausted. Denial and depression were his predominant maladaptive responses. His home situation broke down -- becoming one of risk and frequent crises, despite his eventual, reluctant acceptance of practical help.

The problems were resolved after lengthy negotiations with the patient, his wife and family, and co-operation among the team, the social services and a nursing home. A joint admission for a period of respite and rehabilitation was arranged. Eventually, the patient himself requested that he and his wife remain at the nursing home. They lived there together, as was their wish, for a further two years before his death.

The patient's perception of his "illness" needed to change to a more adaptive one -- with help from the renal team.

Case study 2: Patient needed to assume control
A 40-year-old woman presented with a failed transplant and a history of 10 years of haemodialysis. This patient suffered from malnutrition, frailty, and a diminishing ability to cope physically and mentally, causing increasing concern for her partner and the team. Her predominant maladaptive responses were depression, withdrawal and anger. The extreme anxiety of her partner manifested itself as anger and confrontational behaviour at times of stress. Throughout a losing battle with quality-of-life factors, the patient's increasing need to control her situation led to conflict in all aspects of her compliance.

The team found her care difficult to manage, and tried to maintain a non-confrontational approach themselves. Explanations, negotiation and an emphasis on partnership in care proved the most effective strategy. Only when the patient felt empowered to deal with her health crisis did the situation show signs of improvement.

From what was regarded as a life-threatening scenario, this patient made significant progress, reporting an improved quality of life within some months.

This patient's response to her perception of her illness needed to change to a more adaptive one, in which she was able to assume control over aspects of her care.

Staff need coping strategies, too
Stress in staff may be caused by poor communication and support in addressing psychosocial issues of patient care. Continuing relationships with patients experiencing problems can be a source of stress for staff, who need to develop coping strategies themselves.

If teams can increase their awareness, their own responses may be less stressful and more positive in helping patients to address their own maladaptive responses to problems.

Renal staff need to be aware of the "double bind". They need to recognise that patients are highly dependent on technology and professional skill, and that this dependence can have a profound psychological impact. As quality of life deteriorates, it may be unrealistic to expect model-patient behaviour. It helps to understand the range of responses that patients experience to chronic health problems, and to appreciate that these responses may change over time.

If staff are able to anticipate the progressive stages of a patient's career, they may be better placed to focus on responses and problems that arise, and to provide appropriate support. Information giving and understanding may be enhanced by attempting to develop open communication. It may also help them tackle difficult issues and avoid crises.

Coping with a patient's perceived problems is a stressful and inevitable part of the work. Personal strategies need to be developed, and the need for mutual support and teamwork in dealing with difficult situations must be recognised. Allowing patients to be empowered to make informed choices, and fostering attitudes of partnership can have a positive affect on relationships, and help to resolve conflicts -- particularly those relating to compliance.

Although medical treatment is aimed at benefiting the patient's quality of life, at best it may only reduce the rate at which quality of life deteriorates. Professionals in renal services may need to re-examine the premise that life on long-term dialysis can be prolonged with an enhanced quality of life. Dealing with patients with a deteriorating perception of their quality of life is a challenge for renal teams.

Coping strategies must be developed in partnership with patients to respond positively to individual changing needs. Providing patient-centred care that takes account of the patient's own perceptions of their illness, their responses and psychosocial needs, may be the greatest challenge of all.

Table 1

Table 2

Table 3