Palliative care at Mulago

After another glorious weekend away (see photos of the idyllic Kyaninga Lodge), I started a new rotation on the Palliative Care service this Monday.

The Center to Advance Palliative Care defines palliative care as "specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.  Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment."

An inpatient ward at Mulago

In Mulago, palliative care is provided by a consult service that started in 2006 as a nursing-led initiative, then included doctors in 2008.   Apparently they considered creating an entire palliative care ward, but calculated that about 40% of the 1500 patients in the hospital would qualify for the ward, so they stuck to consults.  The current list is about twenty patients, mostly cancer patients.   Despite the fact that the infectious disease and pulmonary services have the highest inpatient mortality rates (a whopping 30% each), neither of these wards ever consult palliative care.  From my extremely limited experience, this is likely because patients die abruptly on these wards, whereas the cancer patients and end stage renal patients who can't afford dialysis have more advance notice of the terminal nature of their illness.  Like in the US, the palliative care team both helps patients manage their symptoms while in the hospital and helps them transition to hospice upon discharge.

There is no such thing as "comfort care," or changing the focus from curative intent to symptom-driven management for inpatients at the end of life, in Mulago.  Again, my experience is very limited, but I speculate that the incredible dearth of nurses and also a cultural resistance to acknowledging impending death might be barriers to adoption of this concept.  I have seen very little shared decision making in Kampala-- generally decisions flow in a paternalistic doctor to patient direction-- and therefore the evaluation of patient goals and preferences at the end of life that usually precipitates a transition to comfort care would be new and unusual.   Which is not to say that it can't happen, but it might look different and need a little creativity to take hold. 

Elizabeth and Nelson, awesome Mulago senior house officers

Opportunities like this month are a such a gift and opportunity for reflection and growth.  I have experienced many ups and downs over the few weeks that I have been here, and am learning so much.  I have been frustrated with the system and with individuals, and then frustrated with myself, for being at turns too critical and too sensitive, focusing inordinately on the negative.  There are many sources of inspiration at Mulago, most notably the patients themselves, who often travel long distances to seek care and endure their illnesses and the abysmal hospital conditions with stoicism and grace.  Many of the doctors are an inspiration too, tending to far too many patients with very little support and extremely limited resources.  They find creative ways to work with what they have and are always wondering what they can do to make things better. 

My friends Ari and Kelly, who are members of the first installment of the US Global Health Service Partnership, a new healthcare specific branch of the Peace Corps, are another source of inspiration and hope.  They are working in a hospital in Mbarara, a town in western Uganda about 180 miles from Kampala, where they have even more limited resources than at the big tertiary care center Mulago.   I highly recommend checking out their account of their experiences living, teaching and caring for patients in Mbarara on their moving blog, here.  Rather than just bitching about what they see, as I'm doing, Ari and Kelly are trying to build the educational system in Mbarara and inspire the next generation of physician and nurse leaders in Uganda. 

As always, Pema Chodron has something to offer, a balm as I set myself in a little spin. This is from her seven step practice of feeling compassion for others:

"If someone is dying or someone is very ill and I think of them and I wish them to be free of suffering and the root of suffering….  I really want them to be free of fear, fear of the pain, fear of all the spinoff from the illness. I want them to be free and I want myself to be free of all this spinoff…

"Somehow the root of suffering is how we escalate the suffering, how we make the suffering more intense by going on and on and on about it with our habitual reactiveness. In some sense, not to get too complicated or psychological, but often what we're wishing for people is that they be free of their fear of what's happening to them, or their depression about what's happening to them, or their bitterness and anger about what's happening to them.  Because sometimes what's happening to them, we actually can't, it can't be changed. We might wish that it could be changed, but we're not trying to do this practice to get into kind of wishful thinking or, like, if we just aspire enough that everything is going to be all right. Because in life there's so much not everything being alright, you know. 

"There's this old adage that it isn't so much what happens to us, but how we react to what happens to us, that we're working with with a spiritual path. When we wish for people to be free of suffering and the root of suffering, at some level we're wishing them to be free of all the spinoff."