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TB Palliative Care Programs

TB Palliative Care Programs. Dr Rene Krause, Nonnie Mdaka and Suzette Pretorius. We can stop TB. But we can not always cure the patient. People die with or from TB. There are dying patients in TB hospitals There are TB patients in Hospices. WHO Definition of Palliative Care

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TB Palliative Care Programs

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  1. TB Palliative Care Programs Dr Rene Krause, Nonnie Mdaka and Suzette Pretorius

  2. We can stop TB

  3. But we can not always cure the patient

  4. People die with or from TB. • There are dying patients in TB hospitals • There are TB patients in Hospices WHO Definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

  5. Continuum of care in the developing world Late Diagnosis Disease-oriented Care Palliative Care Care of orphans Bereavement Care Hospice care Diagnosis Adapted from WHO Defilippi, Gwyther 2002 Primary Health Care & Specialist care 5

  6. Decreased Incidence of HIV/AIDS/TB Macro and Agencies Hospice/HBC CBO/ NGO PLHA + Family CCG Clinic Micro- community Hospital Palliative Care Standards Sharing of information CCG Community Caregiver CBO Community Based Organizations NGO Non-Governmental Organization PLHA Person Living with HIV/AIDS Integrated Community-based Home Care

  7. Where should palliative care be provided for people with TB • TB hospitals • Primary health care facilities • Hospice/ palliative care programs • Home • Hospice IPU

  8. Who should provide palliative care • Interdisciplinary Team in TB Hospitals • Social worker • Nurses • Doctors • Therapist • Primary health care • Hospice Teams • Home base carers with professional supervision

  9. Holistic Care “through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.

  10. Bereavement • “How small and selfish is sorrow. But it bangs one about until one is quite senseless.” (the Queen mother) • There is “right way to grieve” • Complicated grief • Multiple losses • Long illness • Preventable • Children

  11. Family Carers • Principal providers of care • Support • Educate • TB and HIV Tested • Infection control • Financial • Clear plan about the terminal phase

  12. What makes TB a unique palliative care situation • Social stigmatization • Highly Contagious Disease • Isolation • Pill burden / side effects • Duration of treatment • There is a need to modify the treatment modalities, especially in the choice of drugs and duration of therapy when TB occurs in special situations such as liver disease, renal failure • TB is a disease of a household

  13. An Evaluation to asses the holistic care of Tuberculosis patients with palliative care needs in the Western Cape, South Africa. Aim: to assess the holistic care of TB patients with palliative care needs. Sample size: 20 patients and 16 caregivers Sites: 3 TB hospitals and 2 hospices

  14. Inclusion criteria Has a diagnosis of TB Been diagnosed with a co-existing life-limiting illness Over 18 years of age Has been on TB treatment for at least one month. Has a caregiver involved in his/her care. Is able to understand English or Afrikaans to facilitate the interview process. Exclusion criteria Patients who were not cognitively able to participate in the research Were younger than 18 years of age Living alone with no caregiver involved in their treatment Inclusion and exclusion criteria

  15. Improvement in symptoms since the start of treatment

  16. Complications from TB treatment

  17. Complications from TB treatment

  18. Current symptoms

  19. Caregivers who had themselves tested for TB

  20. Hospice Palliative Care Association TB Task Team (2008) • HPCA member hospices care mainly for HIV+ people with TB • In addition to the need to alleviate suffering in TB patients, the risk of immune-compromised hospice staff members contracting TB is considerable • In 2008 HPCA embarked on a program focusing on • early identification of TB • referral of TB patients • treatment support for patients being cared for within a palliative care context

  21. Objectives of HPCA TB Programme Promoting collaboration between hospice programmes and TB control programmes at all levels Increasing TB case finding Enhancing TB treatment adherence and support in hospice programmes Implementing TB patient management with infection control measures Include TB in hospice risk management programmes Establishing guidelines for TB, including MDR/XDR-TB, within the palliative care context

  22. Provincial Contribution of 2302 People Trained October 2008 – September 2009

  23. HPCA TB Programme Results Staff, volunteers, patients and families within hospice programmes have an increased understanding of TB and infection control TB is included in the 2nd edition of the Hospice Palliative Care Standards  TB is included in the Hospice Data Management System TB infection control implemented in hospices’ risk management program Hospice compassionate care of terminal TB patients ensuring physical comfort through control of distressing symptoms, which assists in promoting dignity for the dying patient; social and emotional support for the patient and family members and bereavement care

  24. Existing partnerships in South Africa (Eastern Cape) • Developed a partnership with DOH to implement community base palliative care for DR-TB • 36 patients reviewed 8 discharged to hospice program and 8 patients still in hospital • Clinical review failure patients are all revered to hospices • Palliative care training at the hospitals

  25. Western Cape Review Committee • Patients died within 1-3 months of drugs being stopped. • Currently 7 patients needing IPU palliative care • Massive haemoptysis • Debriefing of staff • Infectious risk of patients not on treatment • No In-patient palliative care DR-TB service

  26. Major challenges with DR-TB • Anti-social behaviour of patients • Admission of patients in acute situations • Obtaining and maintaining staff • Ethical dilemmas ( AUTONOMY) • Limit community exposure • Lack of DR-TB palliative care beds

  27. Conclusion • Skilled team • Individualised person centred care • Decision about futility of treatment • Assess and reassess • TB is a disease of a household • Evaluation and research

  28. Acknowledgements USAID HPCA TB Task Team OSI

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