Children’s Palliative Care and the Feast of the Holy Innocents

December 28, 2017

Today is the Feast Day of the Holy Innocents, commemorating the legendary infanticide by King Herod’s soldiers, in the first century, of all male infants in Bethlehem. According to St. Matthew (2:13-18), Herod ordered the massacre to get rid of the newborn “King of the Jews,” a potential rival. Thanks the intelligence of an angel, the baby Jesus and his family, were spared (for the time being at least), but like so many children today, were forced to become refugees, and fled to Egypt. He was “rescued like a bird from the fowler’s snare,” (Psalm 124).

The other babes (the Innocents) and their parents, were the collateral damage of Herod’s paranoid jealousy and rage. The structural violence of hunger, disease, and war that kills 15.000 children every day, and millions every year, is the modern version of the Massacre of the Holy Innocents. The World Health Organisation statistics are chilling — “under-5 mortality among children born in the poorest households is on average twice that of children born in the wealthiest households. Eliminating this gap between mortality in the poorest and wealthiest households would have saved 2 million lives in 2016.”

Catherine was one of the Holy Innocents who survived the structural violence of lack of essential healthcare until she was eleven, but died at night at home, of renal failure when a tumour (which could have been surgically removed had adequate services been available) blocked her kidneys. Mercifully, Hospice Africa Uganda (HAU) provided her with palliative care and oral morphine to ease her pain and breathlessness. I met Catherine on a home visit in Kampala last time I stayed with Dr. Anne Merriman, founder of HAU, and a former Medical Missionary of Mary.

Dr. Anne, as she is known, is credited with introducing oral morphine to Africa and teaching palliative care providers, mainly registered nurses, to legally prescribe and use it.The HAU team brought Catherine’s family money for food and an old donated wheelchair because she could no longer walk and was confined to the couch. At least the wheelchair would allow her to sit up and go outside, get some fresh air, and see what was going on in the neighbourhood. After all, improving quality of life is what palliative care is all about! With no sidewalks or accessible streets, there was no chance of her being pushed far, though. In order to get to the house, we had to manoeuvre the chair down a very steep hill, which even the hospice car could not descend because it was so filled with deep ruts.

The global need for children’s palliative care is desperate: a recent Lancet Commission Report found that “Every year almost 2·5 million children die with severe health related suffering (SHS) […] in low-income countries at least 93% of child deaths associated with SHS are avoidable…The cost to cover morphine-equivalent pain treatment for all children younger than 15 years with SHS in low-income countries is $1 million per year. This is a pittance compared with the $100 billion a year the world’s governments spend on enforcing global prohibition of drug use.”

Until governments finally end, rather than continue to fund, the structural violence that generates such preventable suffering, and until they make children’s palliative care (along with prevention and treatment) freely available through Universal Health Coverage, every day is a holocaust of the Holy Innocents in slow motion. Today is just a good day to remember that, and recommit ourselves humbly to the work of alleviating the suffering, one patient and family at a time.

Dr. Anne Merriman with Catherine before her death.

PHOTO BY THE AUTHOR, AUGUST 2017
Dr. Anne Merriman with Catherine before her death.

Pediatric palliative care in Bogotá — Madonna & Angel

Today I met an angel. His name was Ignacio (name changed for privacy). He lives in a poor barrio in Bogotá with his very young mother (Madonna) and father, whose work pays for the insurance coverage that allowed our palliative care team to visit Ignacio and offer him and his family the best care possible.

(All photos used with permission.)IMG_8117Madonna sits with Ignacio, who will die within the month, on her lap. He was born with a congenital heart problem, and without the morphine he is receiving daily, would have died sooner, in respiratory distress. Many babies do not survive gestation.

Our homecare team consisted of Dr. J, Nurse H, and Dr. E, the Psychologist, who also has a diploma in palliative care.

After taking Ignacio’s vital signs and letting him play with her entrancing stethoscope, Dr. J asked Madonna about his symptoms, and learned his quality of life had improved since the last visit. She also fielded a hopeful question about a heart transplant, saying she would put Madonna in touch with the pediatric cardiologist. (She privately told later me that a heart transplant was impossible, for clinical, ethical reasons she could not go into during the visit.) Their medical duties in the house done, Dr. J and Nurse H stepped out and left Dr. E to give her counseling session, asking if I wanted to stay, which I did.  I also asked Madonna’s permission to stay.

Dr. E gently probed her state of mind, giving Madonna the space to say what she needed to say about how it feels to have a baby she knew could die at any moment, yet who seems to be doing better. The rational words failed her, and the tears came. She explained them saying she can’t stop wondering why God should punish her like this. Going over and over what she had done wrong. Dr. E heard her out and then gently told her that God was not punishing her, that he loved her, and was with her in this suffering. (Her theology was excellent!) 

She then practically paraphrased the Buddha’s story about Kisa Guatami the woman who had lost her son, saying that as mothers we never know when we will lose our children — it could be sooner, rather than later, but it may happen at some point. If it happens, tragically in our lifetimes, the death of a child is never the action of a punishing God. Gradually Dr. E calmed Madonna down, as Ignacio played on her lap with the handles of a tiny toy purse, seeming for all the world like a normal six-month old, drooping and eventually dropping off as he felt his mom relax. I told her he was an angel who was visiting her for a while, and was rewarded with a radiant smile.  Dr. E completed the image by saying he was an angel who would always be with her, whenever she thought about him, and even when she wasn’t thinking about him!

Palliative care and access to controlled medicines is excellent in Bogotá, and in some (mainly) urban areas of Colombia. For more information, see the Latin American Palliative Care Atlas. The discipline is developing slowly, and more new cohorts of medical students are receiving palliative care training as part of their education.

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