TB Palliative Care Programs

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TB Palliative Care Programs

• Dr Rene Krause,
• Nonnie Mdaka and Suzette Pretorius

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We can stop TB
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But we can not always cure the patient
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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.
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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
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Integrated Community-based Home Care
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Where should palliative care be provided for
people with TB

• TB hospitals
• Primary health care facilities
• Hospice/ palliative care programs
• Home
• Hospice IPU

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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

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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.

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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

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Family Carers

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

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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

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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

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Inclusion and exclusion criteria

• 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 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.

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Improvement in symptoms since the start of
treatment
Response Number Percentage
1 Yes 16 80
2 No 4 20
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Complications from TB treatment
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Complications from TB treatment
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Current symptoms
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Caregivers who had themselves tested for TB
Responses Percentage
1 Yes 25
2 No 75
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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

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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

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Provincial Contribution of 2302 People Trained
October 2008 September 2009
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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

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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

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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

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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

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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

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Acknowledgements

• USAID
• HPCA TB Task Team
• OSI