Title: TB Palliative Care Programs
1TB Palliative Care Programs
- Dr Rene Krause,
- Nonnie Mdaka and Suzette Pretorius
2We can stop TB
3But we can not always cure the patient
4People 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.
5Continuum 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 Integrated Community-based Home Care
7Where should palliative care be provided for
people with TB
- TB hospitals
- Primary health care facilities
- Hospice/ palliative care programs
- Home
- Hospice IPU
8Who 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
9Holistic 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.
10Bereavement
- 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
11Family Carers
- Principal providers of care
- Support
- Educate
- TB and HIV Tested
- Infection control
- Financial
- Clear plan about the terminal phase
12What 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
13An 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
-
14Inclusion 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.
15Improvement in symptoms since the start of
treatment
Response Number Percentage
1 Yes 16 80
2 No 4 20
16Complications from TB treatment
17Complications from TB treatment
18Current symptoms
19Caregivers who had themselves tested for TB
Responses Percentage
1 Yes 25
2 No 75
20Hospice 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
21Objectives 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
22Provincial Contribution of 2302 People Trained
October 2008 September 2009
23HPCA 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
24Existing 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
25Western 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
26Major 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
27Conclusion
- Skilled team
- Individualised person centred care
- Decision about futility of treatment
- Assess and reassess
- TB is a disease of a household
- Evaluation and research
28Acknowledgements
- USAID
- HPCA TB Task Team
- OSI