Author: Mike Mandelbaum, Chief Executive, The Foundation for Palliative Care Education (PACED)
For many years before Covid shone a light on infectious respiratory diseases, a battle had been raging – far out of most people’s sight – against the world’s leading infectious killer, tuberculosis. TB is curable in the vast majority of cases, but the treatment involves an often noxious cocktail of drugs that must be taken for at least six months or, for drug-resistant strains, typically for 18 months. The psychosocial challenges of this course of treatment have now been recognised in a practical new guidance document that includes palliative care in the final chapter.
TB claims around 1.4 million lives a year. Many of those deaths are people who are never diagnosed and treated. Others, however, are people who begin treatment but cannot cope with the side-effects, who cannot afford the loss to their family income, or who cannot endure the stigma often associated with TB.
TB can be spread easily within families and communities, and there is a high risk of drug-resistant strains developing when the course of antibiotic treatment is not completed. So clinicians focus their efforts on treatment adherence – ensuring patients take each dose of medication. A whole range of observational strategies are used and, as technology advances, these are becoming more and more sophisticated. Insufficient attention is paid, however, to the underlying reasons why patients struggle with their treatment.
The need to better understand and address the psychosocial impacts of TB lies behind a new manual, ‘Psychosocial Counselling and Treatment Adherence Support for People with Tuberculosis’. Published by TB Alert, the UK’s national TB charity, together with the International Union Against Tuberculosis and Lung Disease, the manual encourages and supports health and care workers to reflect on their practice and on their relationships with patients and their families. I co-authored the manual as Chief Executive of TB Alert, shortly before returning to palliative care earlier this year at PACED, the Foundation for Palliative Care Education.
The manual addresses the barriers – physical, economic, psychological or social – to accessing TB care and successfully completing a course of treatment. It provides practical tools such as guided conversational assessment to facilitate people-centred relationships, and describes frameworks for reflective practice. The manual fills a knowledge gap among health and care providers to help achieve good treatment outcomes. It also encourages and supports policy makers to make psychosocial support an integral part of TB programmes.
The parallels between psychosocial support and palliative care are evident: holistic, patient-centred care which addresses rights that are too often overlooked. Palliative care is most often discussed, in the context of TB, for patients with drug-resistant TB. As stated in the USAID-funded ‘Comprehensive Guidelines for TB and DR-TB Palliative Care and Support, “In general patients with multi-drug and extreme drug resistant TB should have access to palliative care. In some [drug-sensitive] patients palliative care may also be needed including those co-infected with HIV and those with extra pulmonary TB.”
Psychosocial support, however, is needed by a much wider cohort of TB patients, and its provision is an integral aspect of rights-based, people-centred care. This aligns with the UN’s International Covenant on Economic, Social, and Cultural Rights which supports a ‘whole person’ approach to the integration of physical and mental healthcare and firmly places psychosocial support as an essential aspect of TB care.
TB Alert’s field work in Asia and Africa demonstrated the need for the manual. One patient we supported was Mary, a 35 year old woman with multi drug-resistant TB. Her husband had recently died and she sold firewood to feed herself and her young baby. Her BMI was 16 and while she received some support from her sister, she was rejected by her community due to the stigma of TB.
Mary received a typical TB package: medicine and adherence monitoring. But her psychological and socio-economic needs went unmet: she did not receive counselling to deal with the stigma of TB or the loss of her husband, support to care for herself and her child, or even information about infection control to protect her family and community.
Tackling cases like Mary’s took a multi-disciplinary approach – again mirroring palliative care – to understand the challenges and respond with tailored interventions. Providing this type of holistic approach not only helps achieve a successful cure, but also protects patients’ mental health and can prevent their families experiencing catastrophic treatment-related costs.
This ground-breaking manual was launched on 14 April at a global webinar involving the WHO’s Director of TB Global TB Programme, Dr Tereza Kasaeva. It is now available to download for free and has been published with a Creative Commons license so that its content can be reproduced freely in other organisations’ training and guidance documents.