Meeting the Needs of Women Living with Fistula that is Deemed Incurable

1. Meeting the Needs of Women Living with Fistula that is Deemed Incurable Sept 19 and 20, 2011, Havard Club Boston

2. Purpose The purpose of the meeting was to facilitate development of standardized approaches and guidelines for diagnosis and management of clinical, ethical, psycho-social and programmatic issues for women living with genital fistula that is deemed incurable

3. Objectives • Share experiences and draw lessons learned on the magnitude and management of WDI • Determine key clinical, ethical, psycho-social and programmatic issues in their care • Identify gaps, opportunities and priorities in the approaches and strategies for meeting the needs of WDI • Advocate for development of rights based guidelines for diagnosis and management options that are respectful of clinical, cultural and continuum –of- care perspectives in a resource poor environment

4. Expectation • Ultimately, MOH, professional associations and other key institutions could use the recommendations as a foundation as they take on the task of developing professional protocols, standards and guidelines for management of women with fistula deemed incurable

5. Havard Humanitarian Initiative, Fistula Care hosted.. • Professionals from Africa, Asia, Europe, USA • representing a number of medical and surgical specialties, including urology, uro-gyn, OBS/GYN, Gyn Oncology and neuro- urology • the group also included mid-wives, a sociologist and a medical anthropologist

6. Consultation Participants (ctd) • Dr. Sayeba Akhter, OB/GYN Bangladesh • Dr. Gloria Esegbona, OB/GYN, ISOFS, UK • Dr. Sohier Elneil, Urogyn/Urogneurogist, FIGO, UK • Dr. Sanda Ganda, Urologist, National Fistula Centre, Niger • Dr. Jennifer Harris Requejo, Assist Scientist, Rep WHO, USA • Prof. Magueye Gueye, Urologist, PAUSA, Senegal • Ms. Erin Mielke, RH Tech Advisor, USAID, USA • Dr. Mark Morgan, Gyn Oncologist, USA • Prof. Oladosu Ojengbede, OB/GYN, Nigeria • Dr. Lauri Romanzi, Uro-Gyn, USA • Dr. Jay Smith, Urologist, USA

7. Consultation Participants (ctd 2) • Ms. Gillian Slinger, Nurse Midwife, Tech Specialist, UNFPA, USA • Prof. Gordon Williams, Urologist/Hamlin, Ethiopia • Dr. Julia VanRooyen, Uro-Gyn, Havard Humanitarian Initiative, USA • Ms. Alexa Walls, Prog Associate, Havard Humanitarian Initiative, USA • Ms Karen Beattie, Project Director, Fistula Care EngenderHealth USA • Dr. Steve Arrowsmith, Urologist, Consultant Fistula Care, USA • Ms. Bethany Cole, Senior Prog Associate, Fistula Care, USA • Ms. Celia Pett, Medical Associate, Fistula Care, USA • Dr. Joseph Ruminjo, Clinical Director, Fistula Care, USA • Ms. Dana Swanson, Program assistant, Fistula Care, USA • Ms. Mary Nell Wegner, Consultant, Fistula Care, USA

8. Defining ‘incurable’; finality

9. Definition of “Incurable” – some variation, even in a small group of experts Near synonyms from lit search – inoperable, untreatable, irreparable, unfixable Fistula that cannot be closed and continence achieved despite all attempts at treatment - absolutely or relatively - by availability of skilled surgeons and geographic location - after ‘several/multiple’ repair attempts Acceptability of treatment options by client and by the community

10. Describing ‘incurable’ ‘About 5% are in the category of incurable fistulas’ ‘Women with complete destruction of the urethra, severe loss of bladder capacity and irreparable damage to continence mechanism.’ Survey; cloacal defect and dense fibrosis, severe scarring

11. Defining ‘success’ ‘success’ is the same for simple and for complex cases; at the end of the operation the fistula is closed and has sufficient continence according to her own estimation to reintegrate and function in her community - But time-frame still needs to be defined by the experts e.g. is it at time of discharge, or 3, 6, 12 months post op? also role of late leaking Whose injuries other than incontinence have been addressed Psychological comfort, acceptable QOL, improved body image Restoration of genital anatomy sufficient for urinary and fecal continence, sexual and, ideally, reproductive function if desired The successful performance of a satisfactory diversion could be included in the category of ‘success’?

12. Culture of Hope, of Possibility • PFRPFD – persistent fistula related pelvic floor disorder • Registry and long term follow up with or without diversion • PFR Disorder/s • PFR Syndrome • ? others

13. Client priorities • Key component of QOL perineal hygiene, skin care, comfort, nutrition - Jika pads, bamboo, re-usable, super absorbent, odor minimizing, IGA • Economic concerns a high priority • Sexual function vs closed fistula • Understanding non surgical options • ‘individualize’ the woman

14. Clinical perspectives

15. Clinical perspectives • Noted constant reminder of ‘surgical failure’ by the ‘cloud of women hanging around long established facilities’, needs not met by surgery, but ever hopeful – different models: villages, hostels, ?others fistularia-begging /commercial sex • Need for standard clinical guidelines for diagnosis and management • Short and medium term outcomes were shared from a few large programs • Need to consider ‘continuum of care’ from saying ‘No’, to non surgical, different urinary diversions of varying technical and F-U complexity, augmentations etc • Proposed 4 W’s for Assessing Fistula Deemed Incurable • WHO is competent to make the diagnosis and management decision • WHEN do we conclude that a fistula is incurable • WHY, primary (truly) or secondary (relative to time and expertise on hand) • WHAT to do • (?? Where?? And set up/resources at facility)

16. Clinical perspectives (ctd) Suitability for advance surgical procedures (such as urinary diversion), hostel like facility with vocational, physio therapy, nursing and nutritional services) to provide long term care Guaranteed ostomy supplies and follow up Alternative treatment/continent pouch/diversion operation should be done by surgeon skilled enough on the procedure Determine type of incontinence (stress, urgency) and grading e.g 1 – 5 UDS monitoring where possible More and better palliative care, medications for OAB, urethral plugs when indicated, any new devices Audit Clinical research

17. Programmatic perspectives

18. Programmatic perspectives Need supportive MOH to build national capacity with infrastructure, systems, equipment Training and credentialing of skilled medical personnel for identification, management and F-U of all fistula and for ‘Incurables’ Functional internal and external referral systems Trained paramedical staff (nursing, physio, nutrition, social work) Support from foreign medical teams until the medical infrastructure is sufficient to manage these patients independently Follow up with bags, appliances, antibiotics, alkylating agents if needed Dedication of team members and support group

19. Programmatic perspectives (ctd 2) Long term post treatment follow up and support Long term psychosocial support Hostels or safe places as permanent, temporary or intermittent safety nets for incurable cases learn from experiences of current key programs, various models Free standing resources and entrepreneurial center with socio- economic development facilities, skill acquisition, IG activities Admin and field officers for proper follow up and outreach services Program emphasis on treatment and prevention options that reach the largest population Funding resources for lifetime of care

20. Programmatic gaps • Lack of ownership and engagement by national institutions, MOH etc • Need to conceptualize as a Chronic Disease, also NCD (new interest) • Include in ICD: ‘if it is not counted, it does not count’ • Reintegration from the get –go, multi-sectoral, • Reintegration not a ‘one size fits all’ • Question of what is meaningful IGA training

21. Ethical perspectives; who are these women, what are their needs?

22. Ethical perspectives • Interwoven throughout the discussions • The welfare and IVDM of the woman is at the center of all interventions • Language vs complexity and literacy; • aide memoire, ‘acting out’ • Counseling of family – especially key person in family- is responsibility of doctor, nurse, social worker • Engage support groups • Provision of a safety net, half way homes for poor access or seasonal • Two ethical models; classic/basic and client centered, model/framework that client can use to understand options, and decide • Availability (and awareness) of ‘second opinion’; Clinical review board

23. 4 Principles of Care 1) Autonomy: ability to decide for oneself, free from control of others & with sufficient level of understanding to ensure free choice 2) Beneficence: the principle of striving to do good (a kind of risk/benefit analysis) 3) Non-maleficence: primum non nocere 4) Justice: distribution of scarce resources, respect for rights and laws

24. What are the client’s 4 boxes?

25. Areas of emerging consensus • A paradigm of possibility -‘incurable’ connotes a sense of finality • A call for social science research • Engaging important stakeholders • Collecting critical data, audit and commission a registry • Empowering women • Conceptualize fistula as a chronic NCD, so as to engage policymakers • Prevention is undoubtedly the most important factor to stem the tide of women living with fistula, a solid training and credentialing process is needed to be sure that women get the best first shot at treatment. • But for these most vulnerable of the vulnerable, a Culture of Possibility and Hope is now overdue

26. Thank You