According to the World Health Organization, tuberculosis (TB) is a top infectious disease killer worldwide. In 2014, 9.6 million people fell ill with TB and 1.5 million died from the disease.
Over 95% of TB deaths occur in low- and middle-income countries, and it is among the top five causes of death for women aged 15 to 44. In 2014, an estimated 1 million children became ill with TB and 140,000 children died of TB.
Progress and future challenges
The Millennium Development Goal target of halting and reversing the TB epidemic by 2015 has been met globally. TB incidence has fallen by an average of 1.5% per year since 2000 and is now 18% lower than the level of 2000.
However, in many countries worldwide, people will need palliative care for TB. It is a leading killer of HIV-positive people: in 2015, 1 in 3 HIV deaths was due to TB.
In 2014, an estimated 480,000 people developed multidrug-resistant TB (MDR-TB). This means that their disease is much more difficult to treat. Often the appropriate medications are not available. Extensively drug-resistant tuberculosis (XDR- TB) is a form of TB which is resistant to at least four of the core anti-TB drugs and is extremely difficult to treat and cure.
Palliative care and TB in South Africa
South Africa has one of the highest incidences of TB in the world. In 2014, it was one of the six countries with the highest rates of the disease.
All around South Africa, hospice and palliative care organisations provide care and support to people with TB and their families.
Hospice and palliative care workers identify people with the illness, support them in taking their medication, and help to address social, psychological and spiritual issues that may accompany their disease.
Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance notes: “South Africa has been a leader in recognsing that palliative care is an essential part of the TB treatment continuum.
“We worked closely with the South African Ministry of Health/National TB Program, with support from USAID TB Care II and University Health Co, to develop: ‘Comprehensive Guidelines for TB and DR-TB Palliative Care and Support’.
“These are the most comprehensive guidelines for TB palliative care currently available.”
The South African edition of ehospice has published a series of articles which follow people who have TB accessing hospice and palliative care services.
Sandra’s story
Sandra*, a 21 year old woman, was referred to Helderberg Hospice in South Africa for HIV and TB support. She was also diagnosed with Kaposi’s sarcoma. At the time of referral, Sandra had been diagnosed with TB for the third time.
Both she and her partner had a history of substance abuse. Sandra had two small children aged five and two. Her two year old son was also diagnosed with HIV and was placed on ant-retroviral therapy.
Despite feelings of frustration and at times helplessness, hospice staff continued to visit Sandra on a weekly basis.
With the support of the hospice staff, Sandra was able to successfully complete her TB treatment. They work together with child protection services to ensure that Sandra’s children and safe and well cared for.
Mr Hendricks
Mr Hendricks* was admitted to Camdeboo Hospice in South Africa with XDR-TB. He was very tired, weak, had painful feet, nausea, difficulty in swallowing and weight loss. He was struggling psychologically along with his physical illness and did not hope for a cure.
He enrolled into the DR-TB programme of the Hospice Palliative Care Association of South Africa, facilitated by Camdeboo Hospice. He now received direct support in managing his TB treatment.
Following his enrollment in the programme, Mr Hendricks felt able to become more involved in decision making regarding his own treatment plan.
Along with that he became more optimistic about his treatment outcome. His mind-set changed from being a ‘defaulter’ to somebody who found a reason to continue his treatment.
Late in 2015, the good news broke and he was pronounced cured. Mr Hendricks is now healthy and able to assist others in similar situations to his.
TB and the Sustainable Development Goals
Ending the TB epidemic by 2030 is among the health targets of the newly adopted Sustainable Development Goals. Hospice and palliative care organisations and workers have a crucial role to play in achieving this.
You can find out more about World TB Day on the WHO website.
*names have been changed to protect identity.
To find out more about the Comprehensive Guidelines for TB and DR-TB Palliative Care and Support developed in South Africa, you can email Stephen Connor at sconnor@thewhpca.org.
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