Holistic HIV care with HAART

Highly active antiretroviral therapy has transformed the management and prognosis of patients with HIV. Alison Bradley and Anthony France wonder if doctors are stepping up to their new role

Highly active antiretroviral therapy (HAART) has redefined HIV in industrial countries as a chronic rather than a terminal illness, changing the doctor's role from carer to treatment manager.^w1 But patients are more than their CD4 and T cell counts. Why should increasing technology in HIV care replace and not complement holistic care? By exploring stigma, psychosocial factors, palliative care, and the controversy surrounding certification of death, this article considers the holistic role of doctors caring for patients with HIV in the HAART era.

New treatment, old stigma

In this information age many in the general public would prefer a diagnosis of cardiac failure with impaired left ventricular systolic function (five year survival 25.2%)^w2 or non-small cell lung carcinoma (eight month survival with chemotherapy)^w3 rather than HIV, despite its better prognosis (three year survival up to 50%).^w4 This shows the unremitting stigma surrounding HIV that has penetrated the HAART era because of several perceptions.

Firstly, one perception is that HIV is a moral judgment passed on through avoidable and socially unacceptable behaviours.^w5 Just as a lawyer representing a serial killer is deemed to share in the evil of the accused so a health professional caring for patients with HIV faces stigmatisation for condoning this "evil." Secondly, HIV is perceived to be lethal and incurable, with patients posing a risk to others.^w5

Why should this be a concern of doctors? Stigma perpetuates fear that prevents people from seeking HIV testing and that prevents affected people, including families, from accessing services. This prevents access to education and empowerment to follow advice to reduce risk. Stigma reduces health status by increasing stress and social and psychological comorbidity,^w6 which have been linked to reduced adherence to HAART.^w7 Because health status and stigma are intrinsically linked, stigma needs to be tackled, but how?

Interventions to tackle stigma have included giving information, counselling, increasing contact with affected people, and teaching coping skills.^w8 But evaluation of effectiveness is limited.^w9 Also, how can health professionals talk of empowering patients yet place the onus on them to cope with society's prejudice?

Lessons may be learnt from the destigmatisation of cancer. This was achieved through advances in treatment, public and professional education, support groups, and legal and political initiatives.^w10 A fundamental step was acknowledgment by the medical profession of the psychosocial needs of patients and their families, which led to an expanded research agenda that encompasses paradigms outside medicine.^w10

Psychosocial matters

In addition to psychosocial concerns identified before HAART (box 1), the treatment has led to periods of uncertainty for the patient related to medical matters (symptoms, prognosis); personal matters (roles, identity, finance); and social matters (relationship implications).^w11 This can lead to heightened anxiety of death or fear of the unknown, which can cause physical and emotional exhaustion in patients, families, and carers,^w12 but research into attitudes to death from HIV/AIDS in the HAART era is lacking.

In addition to monitoring response to treatment, toxicities, polypharmacy associated with comorbidity, and drug interactions,^w13 the doctor also has a role in dealing with psychological matters that accompany HAART. Adherence to a strict drug regimen, unforgiving to missed doses, and so life controlling, can be difficult to promote in people who feel well.^w1 Side effects of treatment, such as lipodystrophy, can unintentionally disclose HIV positive status, raising problems of stigmatisation and psychological concerns associated with change in body image and self esteem.^w1

Interventions that deal with psychosocial matters have traditionally included counselling, cognitive behaviour therapy, psychotherapy, and stress and anxiety management, but research into the effectiveness of such interventions is lacking,^w1 and ambiguity surrounds who in the multidisciplinary team should provide them. In practice it is often the doctor who is looked on as leading the multidisciplinary team. Directly or through delegation, therefore, doctors must be aware of the need to consider such matters to ensure best practice. But if we accept HIV as a chronic illness rather than a terminal one does this mean that palliative care still has a role in holistic HIV care?

The role of palliative care

HIV palliative care has evolved to encompass curative (control of symptoms and management of drugs) and palliative measures (end of life care after failure of treatment or life limiting comorbidities).^w14 Clinical evidence shows that palliative care improves patients' outcomes in control of pain and symptoms, anxiety, insight, and spiritual wellbeing.^w14 Additionally, the social concerns of housing; employment; lifestyle choices; and interpersonal matters concerning partners, family, and colleagues continue to affect health status at all stages of the disease.

Doctors work in a multidisciplinary team that includes nurses, social workers, psychologists, and psychiatrists, each bringing their professional skills and judgment to the palliative care team. The organisation of HIV palliative care services must, therefore, be considered.

Coordinated networks of specialised HIV palliative care services could improve access and care pathways.^w15 Specialist services of one or more doctors and one or more nurses with specialist training could provide care at complex and intermediate level, backed by hospital and community based professionals who have experience in palliative and HIV care (box 2).^w15

Death certification is a legal duty of all doctors, but evidence shows that this duty is poorly performed.^w17 Despite doctors being legally required to document all diseases, morbid conditions, or injuries resulting in or contributing to death, in practice HIV might be omitted from death certificates of people who died from complications of the virus. Juxtapose this with the fact that accurate death certification generates data for epidemiological studies and health service provision,^w17 and it is clear how such poor practice perpetuates stigma and prejudice after patients die.

However, the UK General Medical Council states that patients' confidentiality must be protected after death,^w18 but information recorded on death certificates can be accessed by the general public. The family of the dead patient must show this document to many official bodies, including insurance companies, who will withhold payment if HIV infection is stated as a cause of death. If the doctor fails to document presence of HIV they will have committed fraud. So the doctor is thrust into a difficult situation because documenting HIV on death certificates will breach confidentiality, leaving the dead patient's grieving family to face ongoing prejudice with little support.

The general silence surrounding death certification of patients known or suspected to have HIV serves only to propagate stigma. We propose a review of death certification of HIV patients to expose the extent of the problem; better training in death certification; and changes to the system, whereby a document stating that the death has occurred, and not the actual death certificate, be sufficient to show official bodies. This would protect the dead patient's confidentiality and their family, allowing further research into how people with HIV wish their death to be handled and also the needs of families who experience death from HIV/AIDS. By investigating the views of people with HIV solutions to improving care can be sought in collaboration with, instead of on behalf of, patients.

Conclusions

Research has identified and measured patients' needs but so far offers little insight as to how patients wish their services to be shaped. It is beyond the scope of this article to discuss the varied needs of the diverse HIV population. Although the matters we have discussed apply to the entire population with HIV, however, they are intended to encourage HIV care that empowers patients and must be backed by initiatives and research offering this insight if the patient's voice is to gain its rightful place in shaping HIV care in the HAART era.

Competing interests: None declared.

Provenance and peer review: Not commissioned; externally peer reviewed.

       

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