Physician, Be Not Proud

Dear Friends,

Doctors often disagree on the question of how to break bad news.  Within an African setting, the problem is even more challenging.  A blunt, straightforward assessment is not usually considered appropriate.  More often, the clinician will proceed in roundabout fashion.  "Your father is very sick."  "We are doing all that we can."  "Things are not going very well."

My approach is different.  I believe that failure to disclose the full truth of the matter risks wasted time and resources as families "shop around" for another, futile option.  While a second opinion may sometimes be reasonable, the outcome is too often obvious. 

A few months ago we cared for a man with HIV and advanced kidney disease.  The wife was struggling with the relatively low bill at our hospital but wanted to take her husband to another city for dialysis.  Apart from the financial obstacles, I told her--with clinical confidence--that such an intervention would not significantly prolong his life in Africa (due to cost, venous access, infections, complications, etc.) 

She opted to take him home, to be around family and friends, to pass in peace.  I believe it was humane and tender advice, albeit delivered in blunt terms.

The task is more challenging when the interval between diagnosis and death is longer.  An HIV-infected woman came to us from rural northern Malawi, brought by relatives.  She had a swollen leg, vaginal bleeding, fever, and pain.  Sadly, as is usually the case, no one had performed a pelvic examination in nine months of visiting doctors.  I found an enormous cervical mass marked by infection and hemorrhage.  The diffuse muscle pain and leg swelling were due to bacteria teeming in the blood and smoldering amidst the connective tissue of the leg.

I gave my opinion to the patient and family that her condition was dire and would likely lead to her death.  Following this harsh judgment I still offered referral to the overburdened gynecologist at the central hospital, where there is also a palliative care program.  Surgical intervention may stem the bleeding and--who knows?--I may have been wrong.  We did the best we could for her, providing pain medicines and good antibiotics.  I saw her once more, then never again.

In my experience in Africa, such ill patients just never survive.  Enormous amounts of money (relatively speaking) are spent to no avail.  My patient with cervical cancer had children for whom the extended family would be responsible.  After explaining the referral options, the brother said to me, in effect, "If we spend all the money on care and she still dies, what is left for the children?"  They were looking for the doctor's permission to do the rational thing and simply go home.

I despise the role of heartless judge, dispensing harsh mathematical reality, delivering a hopeless sentence when I came to Africa to dispense compassion.  But I still do it, because I believe it to be the right choice amidst terrible options-for the patient, family, and society.  When more than one hundred children cram a schoolroom with no pencils and paper, when the most basic medical care is so often not available, is it remotely defensible to spend vanishing resources on a one in a million chance?  To ask the question is to answer it.

Although pained by these episodes, I do not lose sleep over them.  Insomnia is instead reserved for what happened last month.

A 25-year-old HIV-infected woman began antiretroviral therapy at the government hospital, yet she became sicker.  A source of endless frustration for me, the clinicians did not determine why a patient should become more ill after receiving supposedly life-saving therapy.  This patient had tuberculosis.  Specifically, she had TB around the heart, which caused fluid to back-up around her body, distending her face, stomach and legs. 

The family, finding no aid, transferred her care to Partners in Hope, where we made this diagnosis immediately.  Tuberculosis therapy was administered along with powerful steroids to dampen the swelling.  Blood was transfused to correct severe anemia.  She improved significantly and was sent home.

Only to return five days later, again anemic and swollen.  She was re-admitted to our hospital and again given blood and powerful steroid injections.

I had previously sat with the patient and her mother to explain the condition.  I did so again in the hospital.  I told them she would recover, that it would just take time.  Many such patients came across my path in Kenya and Malawi, and they also recovered.

She did not recover.  The liver and spleen became grossly enlarged.  She needed more blood.  The oxygen level and blood pressure dropped.  Special medications and supplemental oxygen were delivered.  I honestly believe she received the best medical care available under the circumstances, and care even of a good quality in comparison to Western standards.

And yet she died, leaving a young child.

In Africa, when you communicate a plan or prognosis to a patient, it is taken as a promise.  "But you said I could go home," patients in Kenya would cry out when I informed them of the need to stay an extra day or two on the ward.  I have learned to repeat carefully the word for "maybe" in KiSwahili (labda) and Chichewa (mwina). Still, patients interpret my comments as a promise.

And the truth is, I meant my words to the patient and her mother as a promise, or as near to one as possible without using those exact words.  I did not want her to lose hope, and I am not one to share the false variety. 

The compact was broken:  If she fought on, we would heal her.  I was powerless to keep the promise I had made.  Had I been wrong to make it, wrong to base an opinion upon past experience and firm research?  It was a rationally grounded hope, an empirically-derived promise--and it had been a false one.

I have come to think that Death has become so ubiquitous in my professional life that a single instance of it can no longer crush me.  But it does grind one lower and lower.  It humbles sterile, clinical arrogance.  Pride tempts you to make the promise you cannot keep.  Death brings you to your knees, seeking mercy.

Grace,