People living with palliative care needs require essential services to prevent or relieve suffering and that includes people affected by Tuberculosis (TB) during and after treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.
The prevalence, types, and severity of suffering of people with TB vary by geopolitical situation, socioeconomic conditions, culture, accessibility of primary and specialised health care. Attention to local needs is necessary for palliative care services to be person-centred: tailored to local needs and to the needs of individual patients and families. Many people with TB, and most with drug-resistant TB (DR-TB), suffer in multiple ways: from physical symptoms such as pain or dyspnoea, from psychological symptoms such as anxiety or depression, and from social problems such as discrimination or homelessness.
WHO’s End TB Strategy has a vision of zero suffering. Based on this vision alone, palliative care is an essential part of comprehensive care for people with TB. World Health Assembly Resolution WHA67.19 from 2014 and the WHO Ethics Guidance for the implementation of the End TB Strategy state that palliative care is “an ethical responsibility of health systems and that it is the ethical duty of health-care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured.” Palliative care is a core component of the human right to health.
An initial assessment for suffering related to TB should be done at the time of diagnosis. Palliative care should be initiated immediately as needed and should be combined with TB treatment to relieve any suffering due to the disease, the adverse effects of treatment, comorbidities, or to social problems. It is especially important for people with DR-TB. Tuberculosis care and support care should continue regardless of whether the cure is expected or whether treatment fails. It should be available at all levels of the healthcare system.
Most palliative care can and should be provided by TB and lung disease specialists, primary care doctors, and nurses with at least basic palliative care training. Most people with DR-TB have palliative care needs. Palliative care is best provided by an interdisciplinary team whenever possible. The minimum palliative care team includes a physician, nurse and psychologist or social worker. TB treatment supporters, community health workers or volunteers can be trained and supervised to visit patients at home, to provide emotional support, to recognize and report inadequately controlled suffering or inappropriate use of opioids, and to practise and teach strict infection control.
People affected by TB are often also affected by other medical conditions such as HIV/AIDS, diabetes, hepatitis, chronic lung disease, neurological disease, substance use disorders and other mental health problems. Some of these illnesses and disabilities may by themselves contribute to an increased risk of death among people with TB while on treatment and afterwards. When creating TB palliative care services, the prevalence of serious comorbidities in the target population and the associated types of suffering should be estimated and preparations should be made to address them. Mental health disorders may worsen when TB patients learn of a poor prognosis. Therefore, all TB patients in need of palliative care should undergo an assessment for mental health disorders.
The essential palliative care package need not increase the cost of routine TB care and treatment significantly, if at all. There is growing evidence that palliative care integrated into healthcare systems and including home care can save money for these systems by reducing hospital admissions near the end of life and the length of stay in hospitals.
After completing TB treatment, some people have to deal with the possibility of post-TB symptoms or sometimes respiratory disability or sequelae. TB recurrence may happen in a small proportion of patients including those successfully treated. Counselling at the end of TB treatment is necessary to provide people with necessary information on the possibilities of post-TB symptoms, disability or sequelae, or the recurrence of TB; they need to access health care services for follow-up examinations when necessary.
TB treatment often consists of an initial treatment cycle and, if no response is seen, it is necessary to reassess the regimen and treatment plan as well as to formulate a new plan of action. Suspension of drug therapy is recommended in cases where the medical personnel involved are confident that the patient has been adherent to the prescribed regimen, the patient is on the correct regimen with respect to drug sensitivities and there is no possibility of offering another effective therapy.
TB programmes should explore opportunities to collaborate with local palliative care programmes to provide palliative home care for people with TB. In addition, TB programmes should build basic capacity for the estimated number of patients in need of institutionally-based end-of-life care either for medical reasons or because of the lack of relatives or community members willing to provide home care. Additional resources and articles on palliative care for TB can be found in the WHPCA website resources section at: www.whpca.org