Linking IMAI with palliative care in M/XDR-TB

1. Linking IMAI with palliative care in M/XDR-TB Aka "Using IMAI tools for palliative care of M/XDR TB" Drs Akiiki Bitalabeho and Sandy Gove for the IMAI team and palliative care expert group

2. Palliative care: symptom management (during acute and chronic care) and end-of-life care

3. IMAI and Palliative Care • The first IMAI PC tools were field-tested in 2003. • Palliative care is integrated in all IMAI materials and trainings- for every symptom, consider the specific treatment required and and symptom management. • All cadres of health workers should be trained in palliative care. • Included in pre-service, in-service and second level training materials. Aim is to ensure knowledge and skills for palliative care at all levels and for all health workers. • Clinical mentoring to assure quality of care. • Palliative care in the community: Target is community-based caregivers, community health workers, family and patient (self-management).

4. Emphasis on decentralization, to head toward univeral access, equity. Central/ Regional Hospitals District hospital Health centre Community-based care

5. Relevant IMAI PC tools for 3 levels Central/ Regional Hospitals District hospital Health centre Community-based care

6. Flipcharts for patient education • Chronic care approach prepares clinical teams to partner with the patient • Patient centered • Patient self-management is supported by: • Education and booklets • Preparation of treatment and prevention • supporters for ART and TB (adherence) • Peer support groups • Involvement by expert patients/lay providers – as trainers, on clinical team • Technically sound home-based care with good supervision by facility teams Patient self-management and caregiver booklets, cards for each ART regimen IMAI-IMCI tools empower patients and communities

7. IMAI/IMCI Central, Regional, University, Specialisedreferral Referral, Back-Referral; Clinical mentoring; Supervision by facility DISTRICT HOSPITAL Doctors/health officers/ inpatient RN HEALTH CENTRE Emphasis on strong facility- community link Clinical care- nurses, pharm techs; ART aid. Sometimes clinical/ health officer COMMUNITY Community-carers, family-based care, self-management, community health workers, peer support groups, CBOs Drugs, diagnostics, commodities, logistic support National, Regional and District Management- includes tools to map services, NGOs

8. IMAI/IMCI tool development ART Cotrimoxazole Clinical staging PITC policy Positive prevention PMTCT OI management • Simplify • for • lower cadres • Integrate • (multiple • interventions) • Operationalize • Sequence of treatment, • care and prevention • Develop • tools • Harmonized TB, TB-HIV Malaria treatment IT bednets Paediatrics STI Antenatal, Postpartum, L&D Gender Chronic care Mental health IDU, alcohol Oral health Cancer- palliative care Safe water Safe injections Nutrition Normative guidelines + Country experience + Evidence check

9. WHO IMAI- IMCI- IMPAC integrate: Acute Care Palliative Care: Symptom management Chronic Care HIV+, HIV- PITC TB casefinding OI's Cough, difficult breathing STI's Diarrhoea Skin problems Mental health, alcohol Neurological problems Fever/malaria • General principles • Chronic HIV Care • with ART and Prevention • PreART care, ART • PMTCT • Positive dignity, health and prevention • TB care with TB-HIV Co-management • MDR TB Not disease specific All ages Prevention integrated with care and treatment (by age, serostatus- all) Support for healthy pregnancy & childbirth (IMPAC) Infant, child nutrition & development (IMCI-HIV)

10. IMAI general principles of good chronic care: applicable for long-term TB, TB-HIV, MDR-TB management 1. Develop a treatment partnership with your patient. 2. Focus on your patient’s concerns and priorities. 3. Use the 5 As—Assess, Advise, Agree, Assist, Arrange. 4. Support the patient education and self-management. 5. Organize proactive follow-up. 6. Involve "expert patients", peer educators and support staff at your health facility. (lay providers) 7. Link the patient to community-based resources and support. 8. Use written information—registers, treatment plans, patient calendars, treatment cards—to document, monitor, and remind. 9. Work as a clinical team (and hold team meetings). 10. Assure continuity of care.

11. Simplification and decentralization of treatment delivered through primary health care TB led the way with decentralized delivery at health centre and community level based on decades of experience Home-based palliative care/hospice approaches when IMAI started often did not involve the health centre In a short 6 years, HIV care and ART have caught up • Now substantial experience and success with delivery by nurse-led teams in health centres and district outpatient clinics, with strong community-based treatment support • This has gone to scale in a number of countries > 300 health centres in Ethiopia, hundreds of health centres in Tanzania use country-adapted IMAI tools to decentralize ART More than 50 countries with high HIV burden have adapted IMAI-IMCI tools Almost all countries have adapted Palliative Care guideline module but not as extensively implemented TB-HIV co-management including TB-ART co-treatment now simplified for primary health care delivery – also used expert patient trainers Simplified MDR TB management, based on same chronic care approach, now can be supported at district hospitals and select accredited health centres

12. In the context of a national response to MDR- and XDR-TB Target: health workers in TB clinics in district hospitals and some accredited health centres Draws on the experience of Partners In Health (PIH) in Lesotho- - active training and service delivery Based on the Emergency Update 2008 of Guidelines for programmatic management of drug-resistant tuberculosisWHO/HTM/TB/2008.402- companion document to these guidelines Diagnose MDR-TB Initiate second-line anti-TB drugs Monitor MDR-TB treatment Chronic care approach using IMAI general principles of good chronic care (long-term care); defined sequence of care. Management of MDR-TB: A field guide

13. Other relevant IMAI tools • Guidance and tools: • Psychosocial support– see Chronic HIV Care • Peer support groups • Therapeutic peer supporting groups • Clinical mentors- prepared to support symptom management, as well as specific disease management • Expert patient trainers– to train and later on clinical team (importance for stigma reduction) • 3 interlinked patient monitoring systems • Learning programmes: • Preservice • Inservice (first level palliative care training course) • Continuing education; support for self-learning • Relevant evidence collection

14. Role of district clinician in district network The implementation of many clinical interventions for public health at primary care level requires district hospital clinicians able to manage: • uncomplicated as well as complicated patients • those who fail initial empirical treatment interventions • those with severe illness requiring urgent treatment and inpatient care, including inpatient management of pain and other symptoms

15. Palliative carewithin the IMAI DCM Part of the second level learning programme Fieldtested in 5 countries (Zambia, Tanzania, Uganda, Ethiopia, India-currently occurring in Rwanda) Volume 1 submitted to GRC

16. Target audience and assumptions(stable from start of development; matches child pocket book) : Limited resource settings ONLY HR assumptions: Targets medical officer, clinical officer, senior nurses, and other senior health workers working at a district hospital in limited resource setting. Multipurpose practitioners such as a medical or clinical officer but do not have specialist clinicians such as an internist, paediatrician or psychiatrist (although it may be possible to consult with one). Limited essential drugs (see drug section at end of the Manual; this is subject to adaptation based on the national essential drug list). Limited equipment No mechanical ventilation for medical patients Limited laboratory and other investigations

17. Volume 1 Quick Check and Emergency treatments Manage Severely Ill Patient- including TB patients in severe respiratory distress, septic shock (approximately the first 24 hours of care) Manage Acutely Injured Patient Infection Control, Procedures Drugs- all including for palliative care Volume 2 Acute, subacute illness Multisystem diseases: OIs, NTD, Kaposi sarcoma Chronic management: HIV/ART : including TB-HIV co-management TB: TB treatment, DR TB PMTCT-FP Alcohol, other substance use Prevention Palliative care- applicable to DR TB, special considerations Patient monitoring, pharmacovigilance, notifiable diseases

18. Symptom management In other sections of District Clinician Manual

19. Symptom management • What is the same, what is different for PLHIV, DR TB, cancer? • End-of-life care • What is the same, what is different for PLHIV, DR TB, cancer? • Psychosocial support • What is the same, what is different for PLHIV, DR TB, cancer? • Programmatic approach • What is the same, what is different for PLHIV, DR TB, cancer?

20. Symptom management appears throughout IMAI District Clinician Manual

21. Some improvements to IMAI DCM suggested yesterday by expert review • Difficult breathing in chronic lung conditions- include continuous oxygen • Decisions on end of life care • Decision on discontinuing DR TB treatment • Team, not individual clinician • Choice of the patient, with full information especially of toxicity, resources, quality of life • No blanket decision on failure of treatment • Will examine issue ofpolypharmacy in palliative care and drug interactions with DR TB treatments • Expect further input to happen on management toxicity from M/XDR TB treatment • Statements on human rights (with current references) at start of palliative care chapter • Expecting other inputs from this meeting

22. For cough or difficult breathing • Control bronchospasm: • Give salbutamol by metered-dose inhaler with spacer or mask or, if available, by nebuliser. Stop bronchodilators if the patient is not able to use them anymore, or if breathing is very shallow or laboured. • Consult to consider giving prednisone 40 mg by mouth daily for 5–7 days. • Relieve excessive sputum: • If cough with thick sputum, give steam inhalations. • If more than 30 ml/day, try forced expiratory technique (“huffing”) with postural drainage. • For bothersome dry cough, if an opioid not already being used, give codeine phosphate 30 mg four times daily, if no response, oral morphine (2.5– 5 mg) If patient is terminal and is dying from COPD, lung cancer, AIDS, or any terminal pulmonary problem (but NOT acute pneumonia or TB that can be treated with antibiotics), there are additional measures to relieve dyspnoea: • In end-of-life care,a small dose of morphine can reduce dyspnoea. Monitor respiratory rate closely, but do not let fears of respiratory depression prevent trying this drug. • For a patient not on morphine for pain – give morphine sulphate 2.5 mg everyfour hours. • For a patient already on morphine– increase the dose by 25%. If this does not work, increase by another 25%. • To relieve symptoms of heart failure and to treat pitting oedema, give furosemide 40 mg daily. • To relieve anxiety or terminal agitation, consult to consider giving diazepam. Health centre support for home-based care: Medication/medical

24. Additional hospital palliative care relevant for M/XDR TB • Oxygen (if adequate supply) • Additional analgesic options- IV morphine • IV/subcutaneous infusion • Differential diagnosis and skilled management of symptoms

25. IMAI tools to support implementation of palliative care • Will be progressively updated as the GRADE-based WHO guidelines on pain and other symptom management are produced (if funding and interest from donors and partners) • These GRADE reviews will happen over years • Integrated tools serve as efficient 'vehicle' for implementation of palliative care for HIV, TB, cancer, COPD patients

26. Updating the IMAI District Clinician Manual New WHO guideline Section revised New WHO guideline Section revised Annual print of updated manual (every July Vol 1, December Vol 2) Update of applicable section of manual- on EZ collab- within 3 months

27. Advantages of 'sharing' IMAI-IMCI palliative care tools • Co-sponsorship and co-supervision can bring real advantages. • Using the same simplified guidelines, training, and management support for palliative care for HIV, cancer, TB, COPD, other conditions  • Stronger implementation through shared programmes of work, between several international and national programmes • More coverage • More opportunity to maintain quality • Responds to reality of greater integration at district level: • District management team members often 'cover' several programmes • Health workers multipurpose • Patients need integrated, holistic care; most have more than one problem. Integrated clinical management provides better care. • IMAI is very open to collaboration and improvement of the tools and to better serving TB patients and their families