Transcript TB Palliative Care Programs

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
Care of
orphans
Bereavement
Care
Palliative Care
Diagnosis
Hospice care
Primary Health Care & Specialist care
Adapted from WHO
Defilippi, Gwyther 2002
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Integrated Community-based Home Care
Decreased Incidence
of HIV/AIDS/TB
Macro and
Agencies
Hospice/HBC
CBO/
NGO
PLHA
+
Family
Microcommunity
Hospital
Clinic
CCG
Palliative Care Standards
Sharing of information
CCG Community Caregiver
CBO Community Based Organizations
NGO Non-Governmental Organization
PLHA Person Living with HIV/AIDS
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Where should palliative care be
provided for people with TB
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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
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–
–
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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
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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
Inclusion criteria
Exclusion criteria
• Has a diagnosis of TB
• Been diagnosed with a coexisting 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.
• 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
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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
MP
1%
WC
20%
LP
6%
GT
8%
NW
0%
EC
10%
KZN
38%
FS
4%
NC
13%
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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
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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