INT J TUBERC LUNG DIS 24(s1):3–8 Q 2020 The Union http://dx.doi.org/10.5588/ijtld.18.0240 TB & ETHICS SUPPLEMENT The ethical imperative to relieve suffering for people with tuberculosis by ensuring access to palliative care R. Harding, 1 L. Snyman, 2 C. Ostgathe, 3 S. Odell, 4 L. Gwyther 4 1 Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK; 2 M´ edecins Sans Fronti ` eres South Africa, Khayelitsha, South Africa; 3 Department fur Physik, Friedrich-Alexander-Universitat Erlangen-Nurnberg, Bayern, Germany; 4 Palliative Medicine Unit, University of Cape Town, Cape Town, South Africa SUMMARY Patients diagnosed with tuberculosis (TB) continue to experience clinical uncertainty and high mortality and to bear a high burden of symptoms and other concerns. Additional concerns may be family support needs and stigma, particularly the latter, as TB and human immunodeficiency virus (HIV) coinfection are common. Human rights covenants, global health policy and the End TB Strategy all recommend palliative care as an essential component of care services. As established in the resolution adopted by the World Health Assembly (WHA) on ‘‘Strengthening of palliative care as a component of comprehensive care throughout the life course’’, there is a ‘‘need for palliative care across disease groups (non-communicable diseases, and infectious diseases, including HIV and multidrug-resistant tuber- culosis), and across all age groups’’. We address the ethical imperative to respect the dignity and fundamen- tal rights of people with TB by providing palliative care. We review the evidence for the need for person-centred palliative care and highlight novel models that utilise the skills and training functions of specialist palliative care to achieve better care. We outline simple recommenda- tions for the delivery of specialist and generalist palliative care, offer suggestions on how to ensure optimal coverage by enabling access to appropriate good-quality palliative care at all points of the health system, including alongside treatment. Finally, we set out the current priorities for research and policy to ensure that quality care is delivered to all who need it irrespective of treatment outcome, to minimise distress and to optimise engagement in treatment and care. KEY WORDS: TB; palliative care; mortality; symptoms THE WORLD HEALTH ORGANIZATION (WHO) 2017 Global TB report highlights the continuing challenge posed by mortality due to tuberculosis (TB). 1 The WHO reports that 4.1% of new cases and 19% of previously treated cases in 2017 had drug- resistant (DR-) or rifampicin-resistant TB, and that there were 1 670 000 deaths from TB (95% confidence interval [CI] 1530–1820). A recent systematic review of clinical trials for pulmonary TB concluded that the majority of reported outcomes are bacteriological, with some radiological and clinical outcomes implied. 2 Person-centred outcomes must form primary out- comes in evaluations of treatment and care. Studies aimed to measure person-centred concerns among TB patients have identified significant unmet needs. 3 An unpublished study using the WHO Quality of Life BREF Score and qualitative interviews of TB patients and family carers identified the following symptoms among people on TB treatment: lethargy (50%), pain (45%), shortness of breath (35%), anxiety (35%) and weight loss (35%). The interviews highlighted the great financial burden for TB patients, as well as the poor body image and sexual isolation experienced by TB patients. The change in family dynamics, physical exhaustion and also the fear of contracting TB contribute to partners physically withdrawing from patients, resulting in isolation. 4 Interestingly, the palliative care-related concerns measured using the African Palliative care Outcome Scale among patients with drug-susceptible TB (DS- TB) admitted to a South African TB ward were higher than those admitted with DR-TB. 5 presumably due to the then policy of admitting all DR TB patients and DS-TB patients with acute problems while on treatment. The items with the worst scores were worry (60.5%), pain (42.1%), help and advice with planning for the future (35.1%), symptoms (29.0%) and ability to share feelings (25.1%). Data from a South African community highlighted the emotional and physical burden patients and families face in living with or with someone living with incurable DR-TB. 6,7 Both studies concluded that Correspondence to: Professor Richard Harding, Department of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. email: richard.harding@kcl.ac.uk Article submitted 27 March 2018. Final version accepted 26 July 2019.