The World Health Assembly's Palliative Care resolution of May 2014 calls for strengthening of palliative care as a component of comprehensive care throughout the life course. An integrated patient-centred model of care and prevention is a pillar of the new post 2015 global TB strategy of the World Health Organization (WHO). Deliberations at the 45th Union World Conference on Lung Health in Barcelona brought out that 'integration of palliative care into mainstream MDR-TB services is enhanced though increased community participation'.
Palliative care programmes are most effective when they are rooted in the communities they serve and people are more engaged in the care of seriously ill TB patients. This can be achieved through increased family support and through home based care worker involvement.
There is no contradiction between curative therapy and palliative care and they are complementary to each other. Caring and curing are inseparable from each other and one cannot be there without the other. Reducing suffering is the core focus of palliative care. It is not just for those who are dying, as is most often misunderstood. It is meant to give relief from suffering during the entire course of illness.
Palliative care is a very important part of healthcare for people with MDR-TB. According to International Palliative Care Consultant, Dr Stephen R Connor, access to palliative care for adults and children with MDR-TB is a human right and is an essential component of provision of care for such individuals wherever in the world they are receiving care. Virtually all MDR-TB patients need palliative care which should start from the time of diagnosis, and given throughout the course of treatment. It can relieve medication side effects, reduce psychological and social suffering, promote adherence; and even reduce morbidity and mortality.
“Caregivers are often the intermediary between a health facility and the patient. Family members and relatives are principal providers of care. But care for caregivers is also needed—counselling, active problem solving and knowledge about the disease. Fear, inappropriate knowledge and beliefs of caregivers are often worse than those of patients themselves,” says Dr Connor.
Refiloe Matji informs that many patients are now moving to community based MDR-TB treatment in South Africa. Under an USAID project NGOs are funded to provide services at community level that range from direct patient support (providing medication at patients’ home, adherence support, psychosocial support and monitoring side effects and referral); contact tracing, health education; and capacity building.
Liga Kuksa of Latvia agrees that palliative care enhances community involvement and community involvement improves quality of life of MDR-TB patients. In her opinion, it is important to put into effect palliative care practices in each country. Countries should develop palliative care protocols not only to have access to necessary medication, but also organize psychological and social support. monitoring side effects and referral.
Irina Gelmanova from Tomsk in the Russian Federation shares that in Tomsk, where alcoholism is a big problem, palliative care is a part of patient centred treatment approach.
In Rwanda work is in progress by the government to integrate palliative care into its healthcare system at the central, district, sector and community level, so that community health workers (CHWs) in each village provide homecare and serve as eyes and ears of clinicians at higher levels.
In Malawi, early results suggest that comprehensive palliative care can be provided in rural Africa by integrating it with disease modifying treatment, linking hospital, clinic and homebased services and providing psychological support including socioecionomic assistance to those in need.
In the Peru model CHWs provided assistance to patients with weakened family structure; patients and their families were provided food and infection control in homes, transportation to go to clinic, as well as individual and group psychosocial therapy. This model proves that it is possible to treat MDR-TB patients in ambulatory settings with patient supervision, aggressive side effect management and psycho-social support like wrap-around services—providing food, transportation stipends, and/or other economic assistance.
In the opinion of Dr Eric Krakauer, Centre for palliative Care, Boston, as treatment becomes more specialized, medicines focus on organs and forgets about people. He pleads for TB specialists to be more patient focussed and agrees that “Integration of community based palliative care and MDR-TB treatment can improve patient outcomes, including care.
“District Palliative Care networks should be integrated into public healthcare systems. We must have a diagonal strategy for strengthening healthcare systems: rather than focussing on either disease specific vertical or horizontal systemic programmes. Avoid false dilemmas between disease silos that plague global health,” says Krakauer.
Dr Mario Raviglione, Director of the Global TB Programme at WHO voices similar thoughts. He told Citizen News Service (CNS) that- “Engagement of communities is crucial—both in urban and rural areas. I that in all countries communities empower themselves to take care of their own health. So if we involve the community in a systematic way then there is hope. The concept of engaging communities is part of pillar two of the post 2015 Global TB Strategy. We have to make sure that communities are educated to put political pressure locally and nationally and also that communities participate in provision of care, diagnosis, treatment, and supervision. We have to get to the grass root level to deal with TB at the very peripheral level. We can no longer depend upon vertical programmes. There should be a link between the community and the health systems”.
Dr Connor rightly advises that, “PC should use an inter-disciplinary team approach to meet the needs of patients and families—educating them on cough etiquette, mask use, proper ventilation, care plan, treatment follow up; it should be applicable throughout course of illness along with disease treatment and provided in all settings where patients are-- homes and inpatient facilities.”
So the way forward would be to use CHWs who are connected to clinicians at higher levels and social supports, for integrated community based palliative care and disease treatment for not only MDR-TB but other diseases (like HIV, cancer, diabetes) as well. This will not only save money by improving treatment adherence and reducing unnecessary hospital admissions, but also improve patient outcomes including cure rates, longevity and quality of life.
Shobha Shukla, Citizen News Service (CNS)
1 November 2014(The author is the Managing Editor of Citizen News Service - CNS. Lilly MDR TB Partnership is supporting CNS Correspondents' Team to provide thematic coverage from the 45th Union World Conference on Lung Health in Spain. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on gender justice, childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)
