A Poignant Plea for Palliative Care and Existential Questions 4Feb2016

Although we have struggled each year with the realities of Ilula, this year it seems especially acute. The backdrop of this experience with the learners and faculty is the extremely resource-poor hospital.  For example, medicines are not supplied by the government as they should be. Or other supplies like lab reagents, the lack of which idles essential machines and thus cannot provide the tests that could guide our care if we had them.  We can live with this and depend on our clinical acumen and our Tanzanian colleagues’ experience.  This accompanied by the helplessness we feel when our patients die, sometimes because we do not know the correct treatment and do not know the disease we are treating.  We name things as best we can and work from there.

We sometimes do differ in therapies from our colleagues too.  In Ob, our learners have made the diagnosis of pre-eclampsia a couple times and the doctors seem to be slow to respond.  This tries the physical capacities of the two patients, mother and baby.  The wazungu look on in pain, so aware of the differences in approaches to care.  We are used to being so much more aggressive.  The choice sometimes comes down to precious resources at a full (US) course of therapy or several partial courses.  Which approach helps more patients in this resource scarce environment?  We have only our biases to support our opinions on this.  It will stay this way until resources are adequate.  There are advances here including a significant drop in child and maternal mortality over the past half dozen years.

We have smart colleagues with local experience which certainly trumps our intellect, knowledge and experience nearly every time.  Well not every time.  We have some pretty smart cookies with us, faculty and learners.

But more disconcerting I think is a category of factors, like under-nutrition, which I refer to as “the disease hiding in plain sight.”  We see a tremendous disparity in things we think are controllable in any setting.  The Ob suite is always clean, despite a half-dozen or more deliveries per day.  I am a little reluctant to cast aspersions, since we know that the resources are so frustratingly low.  Some of the wards are dirty.  Yes, it is difficult to keep the chickens out of the open ward.  And some of the wards were painted last year.  This was a donation by visiting group.  Maybe the dirty stains need to be covered by new paint now.  Still, without cleaning, it will need more paint soon.  Does the lack of resources excuse the dirt?  Or perhaps the lack of resources saps the pride from the staff and this has become the “best we can do.”

And here we are.  All bright and shiny, here for a few weeks once a year.  Who are we to criticize?  We want to help and yet we must take great care not to judge.  So our existential question is this: how?

The above is capped off by the importunate speech we heard this morning.  It was mostly in Swahili, but several of us picked up on the words, “palliative care.”  We asked for a summary in English.

The palliative care team is usually a chaplain as leader, a nurse and a doctor.  They go out about once a week if everyone is available.  They dispense some medicines, write prescriptions and provide spiritual as well as medical care, a truly holistic endeavor.

They have no funding.  And they have 850 patients in need, and simply too few staff to provide the care.

Except as the charity of the staff can provide, that is.  They did have some fairly regular support from somewhere which has dwindled.  There is also the “poor patients’” fund, donations solicited from visitors.   I think it is a pittance.

I know the palliative care team could use cash, especially a regular stream.  They write prescriptions but often are thwarted when the patient cannot afford the medicine anyway.  Heart rending was the request for food and clothes and, of course, medicine.  Yes, all of those do translate to money.  And I suppose there is no end to the need.  It is the starfish story.  We will not likely save these humans but with a little cash, we can make them more comfortable.