QOL

Nurse case manager

Quality of life: Noncompliant thirty-year-old HIV positive male AIDS patient

Assessing a patient's quality of life (QOL) before a case management intervention is perhaps inevitably subjective to some degree on the part of the nurse case manager, no matter how rigorously objective and evidence-based the instruments he or she strives to deploy. The nurse must be aware that the evaluative process must be at least partially based upon the patient's rather than the nurse's view of what constitutes a 'quality life,' given the highly personal and culturally bound nature of such a definition. When assessing a patient's status, a nurse must be careful to minimize his or her subjective personal perceptions as to what constitutes a quality life, and be respectful of the patient's personal definitions of health and happiness. However, this does not mean that the nurse can or should not institute careful guidelines regarding the patients' health practices.

Regarding a thirty-year-old man who is HIV positive who refuses to take his medication, the nurse has compelling reasons to intervene. First and foremost, if the man does not take his medication because of a failure to appreciate the seriousness of his condition, whether this noncompliance is due to denial, clinical depression, or financial considerations regarding his treatments, the man may needlessly suffer the ravages of AIDS and regret his decision as his health deteriorates. Secondly, the nurse has a responsibility as a health professional to engage in disease management, even while she takes the patient's wishes under consideration.

Quality of life can be defined to include such factors as occupational functionality, personal happiness and ability to make positive social connections, even the cost of being ill from what the individual could earn if he or she was fully 'well.' According to the quality of health domains measured in the World Health Organization (WHO) Quality of Life (QOL) HIY instrument, by the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) QOL instrument, and the Medical Outcomes Study (MOS), the measures of QOL most appropriate to AIDS patients include the patient's levels of physical health, psychological health, the patient's strength of social support, the patient's relationship with his or her partner (if applicable) and sexual well-being (Solomon et al. 2009).

Obvious physical measures of the patient's health would include the patient's HIV status and health indicators relating to this aspect of his condition, such as his T-cell count. Before engaging in active interventions, the nurse as case manager must ensure that the patient has had a through physical evaluation, and review the patient's past health records. The nurse should examine the patient for possible physical problems that could affect the patient's future health even though they might not be directly related to a failure to take his or her medication, such as physical disabilities, diabetes, or other chronic conditions. When comparing the patient's state of health before and after the intervention, it should also be noted that the danger of the patient manifesting fully-blown AIDS is not totally controllable by antiretroviral drugs, given that even regular medical treatment with such drugs cannot always fully forestall the development of the illness. The patient should be made aware of this fact. The goal of case management is to minimize the manifestation of full-blown AIDS occurring, through regular treatment with prescribed medication. The patient should also be aware that antiretroviral drugs have a strong record of improving life quality and duration.

A measure of the success of the intervention might include documented adherence to the treatment schedule, improvement in all physical health indicators (including those not directly related to HIV) and a minimization of uncomfortable side effects. All of these are concrete measure of physical well-being post-intervention. Side effects are an important issue to consider regarding antiretroviral noncompliance: if the patient's noncompliance is due to problems with side effects, managing the physical problems caused by the drugs is an important step in ensuring compliance, and minimization side effects is one way to measure likely improved compliance physical health. Treating conditions unrelated to the patient's HIV status may also improve compliance -- for example, a patient with heartburn who frequently experiences nausea that is exacerbated by one kind of antiretroviral may be more willing to be treatment-compliant with another drug that does not have this side effect.

Other measures of physical quality of life manifest themselves in the ability to engage in appropriate self-care, such as daily hygiene, having regular eating and sleeping habits, and showing indications of normative daily functioning. Pre-intervention, the nurse must establish the patient's personal, accepted baseline of normative behavior and health, to see if this has improved post-intervention. As well as examining medical records the patient must be interviewed to establish his goals and expectations. For example, a patient who places a high priority on working out may dislike the antiretroviral side effect of bloating and nausea. Even if the nurse cannot minimize all of these side effects, the nurse must show compassion and understanding, and attempt to find ways to adjust either the drugs or the treatment schedule to improve this patient's personal, high priority on this aspect of his physical health.

Psychological quality of life is linked to physical well-being -- depression can interfere with normal eating and sleeping patterns, and it is only normal for an HIV patient manifest some signs of depression. Other psychological red flags to watch for during a pre-intervention are a lack of articulated, future-focused goals and hopelessness about the future. Simply because a patient is ill does not mean that he or she cannot or should not have dreams about the future. Helping the patient establish healthy coping mechanisms other than medical noncompliance is a key part of a successful psychological intervention. Improved self-esteem and having clearer life goals are two psychological measures of a successful intervention.

Having a high quality of life also necessitates social support. This might include demonstrated access to medical treatment and medical personnel. Medical treatment must be financially and logistically feasible, in terms of the patient's schedule and ability to travel. The patient should show signs of actively seeking support from AIDS groups and charities for counseling and financial help, if necessary, after the intervention. A patient without friends and family in the area will have less of an incentive to take care of him or herself, and also will have less friendly and consistent social pressure to do so. Even if the patient does not have family in the area, being in a support community of HIV-positive individuals will encourage positive social modeling of healthy behaviors, like medical compliance. Conversely, a lack of social support from fellow patients results in fewer incentives to engage in self-care.

Work can also be a positive social force. Having a routine and the positive pressures of responsibility can encourage the patient to look forward to the future. Especially if the patient has lost loved ones to AIDS, he or she may have a lack of a will to live or survivor's guilt. The presence of other responsibilities, either through work, volunteering, or even caring for a pet can be helpful to keep the patient connected to the world. If the patient does not have these types of social ties, the nurse should connect the patient, if he so desires, to job search resources or other types of vocational support, such as training.

Finally, he question of the patient's partner in his or her compliance or noncompliance must also be addressed. During the pre-intervention evaluation, the patient's partner should be involved, if he or she and the patient are willing. The nurse must ask some difficult questions: Is the patient's partner also HIV positive? If not, appropriate precautions must be discussed. If the patient's partner has fully developed AIDS, the role this has in the patient's decision…