Presented by Leigh Snyman April 2017

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1 Presented by Leigh Snyman April 2017

2 Overview Definition of Palliative Care Case based discussion Take home messages

3 What is Palliative Care? WHO Definition of Palliative Care: Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with lifethreatening illness Methods: Prevention and relief of suffering Assessment and treatment of pain and other problems, physical, psychosocial and spiritual WHO 2010

4 Palliative Care in Phases Diagnosis Curative/ life prolonging therapy Clinical Management Terminal Phase Palliative management

5 Palliative Care in Phases Curative/ life prolonging therapy Cure disease Manage adverse events/ side effect Complete treatment and achieve treatment success Clinical Management Diagnosis Terminal Phase Palliative management Relieve patient from suffering Manage symptoms Protect patient autonomy Patient centered care Good treatment journey whatever the outcome

6 Case study: Patient X 27 year old man HIV negative (confirmed) Unemployed, lives alone No child contacts Previous DS-TB in 2011 cured March 2015 presented with new TB symptoms GXP pos RR-TB, on sputum Culture pos, res to RIF and INH, inha only, sus to Ofx and Ami MDR April 2015 clinically stable and ambulant Commenced standard MDR treatment

7 Case study July 2015 (month 3) Monthly sputum cultures contaminated Interrupted treatment for 6 weeks August 2015 Returned to care stable and weight increased, but coughing and night sweats back again August sputum culture negative Resumed MDR treatment (with Kana) at end Aug Dec 2015 (month 8) Culture positive again since Oct, losing weight Abscess at injection site Kana withdrawn Considered MDR treatment failure offered strengthened regimen with BDQ, LZD and CFZ

8 Case Study Jan 2016 (month 1 new regimen) Sputum culture pos, res to RIF, INH and Ami pre-xdr Continued regimen: PZA / BDQ / CFZ / LZD / LFX / TRD / hdinh June 2016 (month 6 new regimen, [mth 14 total]) No culture conversion (lots of contaminated samples), still culture positive in June No weight gain, bilateral extensive disease Adherence reasonable attending clinic in the week BDQ withdrawn (6 months completed, Tx failing) Considered pre-xdr treatment failure

9 Case example Aug 2016 (month 15 total) Still on PZA / CFZ / LZD / LFX / TRD / hdinh Not eligible for surgery, or for NIX trial Case presented to NCAC and Provincial M/XDR Review Committee all agreed to withdraw treatment and manage palliatively But patient refused and begged to continue! Commenced palliative pathway (Leigh) Nov 2016 (month 18 total) Still on treatment, much improved on morphine and with access to oxygen in sub-acute facility Discovered Aug sputum culture negative

10 Case example Jan 2017 (month 20 total) Still on PZA / CFZ / LZD / LFX / TRD / hdinh Still on morphine but no longer on oxygen Four monthly sputum cultures negative, but slow clinical improvement Patient wanted info about other available options Sputum submitted to Pretoria for extended DST Application submitted to add DLM and Meropenem to regimen, and restart BDQ, along with current regimen Mar 2017 (month 22 total) Admitted to BCH for monitoring, IV port inserted, now on salvage regimen, and hopeful!

11 Case study: Patient X Treatment failing? Hope failing? Body failing? Friends/ family failing? The Health care system failing?

12 Relieving suffering Continued TB medication on pt. request Encourage Hope while ensuring patient had insight into situation Assess and treat the Body Educate Friends/ family Support the Health care system Access to medication, sputum test, respite care, emergency admissions and isolation

13 Ethical Issues to Note Patient Autonomy versus Patient Review Board decision Public harm: infection control implication of patients staying in the community Patient Harm- limited access to care Justice- Equal access to life saving treatment, care and support

14 Conclusions Cases confirm: Living with a life threatening disease is challenging Relieving suffering is possible at community level Sufficient care provision at community level often does not happen from MSF s experience with various cases Palliative care provision is not a reflex response

15 Recommendations Prioritization of RR-TB Palliative Care Guidelines drafted by South Africa for implementation in 2016 Palliative care training for HCWs need to be prioritized at national and provincial level Partnerships between district health services and district Palliative Care services are key to implement services at community level New Drugs + Trained HCW + Resources = Hope for the future

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