Review: Palliative Care for People Affected by Multidrug-resistant Tuberculosis

The World Health Organization (WHO), as part of its vision of "zero deaths, disease and suffering due to tuberculosis," states that palliative care and symptom relief are essential elements of care for people with multidrug-resistant tuberculosis (MDR-TB). Yet palliative care rarely is accessible for these patients, especially in low and middle income countries where the needs are greatest.

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In a review published in the International Journal of Tuberculosis and Lung Disease, Eric L. Krakauer, MD, PhD, attending physician in the Division of Palliative Care and Geriatrics at Massachusetts General Hospital, and colleagues discuss why and how palliative care should be integrated into the treatment of MDR-TB and be universally accessible.

Palliative care is imperative for patients with MDR-TB because it can:

• Relieve symptoms such as pain, dyspnea, nausea, vomiting, depression and anxiety that are prevalent among patients with active TB due either to the disease or the treatment
• Help patients adhere to long, noxious treatment regimens, thereby potentially reducing mortality and helping to protect public health
• Reduce the financial burden to patients' families and reduce costs to health care systems and governments

Scope of Palliative Care for MDR-TB

Palliative care for people with MDR-TB should not be provided only for end-of-life care. It entails responding to and relieving patients' suffering of any kind—physical, psychological, social or spiritual—at any time during the course of the illness and regardless of whether the suffering is due to the disease, the treatment or social problems such as stigmatization or extreme poverty. It also entails attending to the psychological, social or spiritual suffering of family members during the patient's illness and, as needed, during bereavement. Palliative care should be integrated with and complement prevention, early diagnosis and treatment of MDR TB; with infection control; and, as needed, with the treatment of substance use disorders.

The Essential Package

Palliative care for people affected by MDR-TB isn't expensive or complicated, but it does require basic training, a modest array of commonly available medicines and equipment and more nuanced guidance than previously available. In a table in the review article, the authors summarize an essential package of palliative care for MDR-TB that they published separately. The principal elements are:

• Palliative medicines
• Simple equipment (such as adult diapers and mobility aids)
• Social supports for the very poor (food packages, cash transfers)
• Human resources (with basic training)

The essential package is based on the WHO's essential package of palliative care for primary health care, and it builds on and refines The Companion Handbook to the WHO guidelines for programmatic management of drug-resistant TB.

The essential package describes the minimum palliative care that should be accessible to adult and pediatric patients with MDR-TB, whether or not they are undergoing treatment and whether they are hospitalized, in prison or at home in the community.

Integrating Palliative Care into MDR-TB Treatment

The reviewers provide detailed guidance about integrating palliative care into the treatment of people affected by MDR-TB, including ethical considerations. To individual clinicians, they recommend that:

• All ambulatory patients and inpatients with MDR-TB should undergo palliative care assessment at the time of diagnosis or first contact, and palliative care should be part of every MDR-TB treatment regimen
• It is preferable for most patients with MDR-TB to be at home with loved ones, whether they are on treatment or receiving palliative care alone
• Following only very brief training, supervised community health workers or providers of directly observed therapy can provide surveillance and emotional support as often as daily
• For patients with MDR-TB who are near the end of life, hospice care should be available on a voluntary basis; involuntary inpatient hospice care should be considered only in extreme cases

Conclusion

Basic palliative care and symptom relief for people affected by MDR-TB can be taught easily to TB specialists as well as primary care clinicians and community health workers. It can be delivered in hospitals, clinics or patients' homes and integrated with MDR-TB treatment and infection control measures. The medical, psycho-social, public health and financial benefits of integrating palliative care into MDR-TB treatment programs make this a medical and moral imperative.

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