“The mangoes are ripe !” A welcome reality as I step back into life in Muheza. We are enjoying daily mangoes for pennies and delighting in our ½ km diet (backyard avoes soon to follow). “The mangoes are ripe” can also be a saying (in Swahili of course) that adorns kangas (the brightly coloured rectangular cloth that wraps around the waists of all women here) so its always good to get the translation of the saying on your kanga before strutting around town!
I had fretted more than a bit about sliding back into life and work here; from the cold and grey and ‘luxury’ of Toronto, thinking of Muheza’s heat and sights and hardships and especially the problems at Teule Hospital had made me quite anxious. However, the transition back has been easier than the transition to Canada! In talking with Sally and Rose, I realize this may in fact be forshadowing of things to come for the Marsh-Norgrove reintegration down the road , as S and R have found themselves missing Muheza big time and their African life here, and the transition back to regular life in Victoria harder than expected…
So although power outages, no running water for 3 days, no internet connection, 30-35 degrees, tough clinical cases have characterized my first few days back, I am very quickly feeling “in the fold” of the family (we are a tight unit here !) and engaged back in our journey and work life here. This is a bit of a catch up blog so I hope you have a few minutes open to join me.
It was so good to be part of dad’s recovery phase. By the time I managed to get a flight (thanks Sally for your help) and make the trip (really it took 2 full days door to door) Dad had hit rock bottom of a huge GI bleed and was in the ICU beginning the long road back. It was a crucial time to be with him and to be reminded with fresh eyes of the challenges of being 81 and critically ill in the big machine of a huge state-of-the-art urban hospital (more than 700 beds between Scarborough general and Grace). He received very competent and compassionate care, with a few especially shining stars and fewer low lights. By the time I left, Dad could walk the hallway (with walker) and was beginning to do stairs. I talked with Charline last night (her loving care and support has been a wondrous sight to behold) and hear that he is now days away from discharge. Dad received about 17 units of blood and plasma during his time there….
The contrasts between medicine in Toronto and medicine here could not have been more starkly juxtaposed. I am back where the prompt scoping (the procedure to look beyond his stomach into his small bowel to identify the bleeding and stop it) that Dad received in Toronto (in fact he had it 3 times in all) is not something we can offer here and such a medical situation would quickly turn into a death. Alex (UK doc here) relayed to me a case that ran parallel to my father’s that he had cared for while I was away. Young man, previously well, upper GI bleed, no scope…..blood products very limited (a family member has to donate unit for unit of blood to the blood bank…not always possible , therefore no or very limited blood for a patient) and sadly general apathetic lack of willingness to trial surgery (a poor but possible second best to identify source of bleeding). Needless to say, this man died.
The time in Toronto has solidified a couple of themes on the work front that have been evolving in my mind. One is that part of our internal struggle is the notion that we are weaving palliative care into situations frequently where people ought not to be dying (or wouldn’t be in Canada). I know , I know…. Seems obvious, but it continues to rub in a very uncomfortable way. So often it is young women with children in the prime of life dying of HIV related illness. It feels a lousy second best to be ensuring that the overwhelming headache of her cryptococcal meningitis is relieved and that she is not suffering as she dies, rather than ensuring her survival to raise her children.
Yes, there are ARVs, but there are probably less than ¼ of the treatment options we have for people at home (Chris Fraser help me out here). The reality of ARV’s in a ‘resource poor setting’ is totally different than in Canada. The notion circulated at home is that ARVs turn HIV from a death sentence into a manageable chronic disease. This is not entirely accurate here. Ease of access to ARVs , stigma, nutrition, co-morbidities (TB, other infections, cancers), competing religious/spiritual beliefs regarding the need to stay on ARVs once healthy, all affect adherence to this life-long treatment and survival. Sadly, the introduction of ARVs is not an instant switch to survival but rather a slow evolution, and we are early on in that continuum. Being HIV positive still means high likelihood of death…perhaps months or a year or 2 or 3 later.
And where is the husband of this woman dying of HIV related meningitis ? Perhaps already died…or likely not yet identified as HIV +, not willing to be tested or receive treatment (even though he probably infected her). She was perhaps identified via obligatory pre-natal testing when she had her last child, or voluntarily out of her concern for her children and for her survival to raise them. Anecdotally, three quarters of the patients waiting for ARVs at Diana centre are women and this is a profound curiosity to me. That stigma is so huge, he would rather die than be identified HIV + . Apparently many women attend and don’t even tell their husbands of their status for fear of being abandoned by them.
So the emotions and ethics of building a palliative care program in a setting where many of the deaths feel needless is confusing and distressing. In Canada palliative care providers have the luxury of feeling confident “everything was done that could be done” or at least everything that people chose to pursue was done. Elements of choice and access to lifesaving treatment are not present here in the preamble to a palliative care program. A very profound difference. And yet people continue to die and need comfort and an organization of care services to support them, until the slow wheels of change come around.
The other major reality is the profoundly different experiences we are having at the 2 hospitals in which we are working. At Teule morale is poor; “morning meeting” (daily discussion of critically ill patients and the deaths overnight) is either characterized by non-participation, or more often turns into a mutual accusation-fest. At Teule, if you write an order, the meds are frequently not given to patients or only some doses. Patients may even go for days, critically ill, without being seen due to abject neglect by certain clinicians.
Gratefully, gleefully for us, Bombo is so different. The basics of medicine are functioning. Patients are seen every day, histories taken, patients examined. Orders are carried out, care teams/consultants seem to work collaboratively. The leadership is excellent. There is a sink on each ward to wash your hands, and the wards seem cleaner (nurses are responsible for cleaning !!) We are welcomed and we feel proud and privileged to be mentoring the new palliative care team there and so grateful to be having this contrasting experience, still a ‘resource poor setting’. It has made us understand what a difference leadership and moral and local history make and probably a whole lot of other things we will come to understand over time. It does also feel better to be palliating where, at least we know that everything that could be done here in Tanzania, has been done and usually done well. (Not so at Teule)
An emerging urgent concern is the nationwide shortage of something called paraben, a chemical used to stabilize oral morphine solution. Apparently supplies will run out by January and the order is mysteriously not available from the usual S. Africa. This could mean that morphine will cease to be available to Muheza from Ocean Rd Cancer Institute, just when we are expanding its use dramatically and formally applying for its distribution to Tanga/Bombo. We have begun emailing collegues/pharmacists/neighbouring Uganda to try and urgently secure a supply of paraben. Any ideas from you medical types reading this would be most welcome !
We leave in a week for Christmas in
We look forward to visits in January from Joel and Paula, and Fiona (my old office partner) and her daughter Haileyy with their friends Stephanie and daughter. In February maybe even Pam and Anneka !
“Wuzungu” (white European) dinner was renamed ‘Wednesday dinner’ as this crop of medical students from London, Eng. are, of course, not white. Griffin continues to be my steady companion for the late afternoon cycles, a cherished time with him where I can hop on my gearless wonder and roam the sisal fields and villages and finally relish the African sun, well past its prime of the day.
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