palliative care and "conservation" at Lake Malawi

Life is many things in Malawi, but uneventful is not one of those. Lucy Finch, our host, and I are woken this morning by the saccharin sobs of an eighteen month old out in the courtyard, coughing and sputtering miserably, her cocoa skin flushed with fever. Her mother has arrived at “Dr. Lucy’s” unofficial office, her lovely home on Senga Bay, Lake Malawi, in the hopes of relieving her daughter of the bewitchment that is affecting her. Lucy asks simply if I have brought syrup with me, which thankfully I have, and we mix up a promising potion of western medicine to provide a reprieve from the pneumonia that has this sweet little girl firmly in its grasp. Lucy points out the uncharacteristically silky hair and evidence of malnutrition, the telltale markers of HIV infection, but the mother seems blissfully unaware of the signs. Now is the time to get her tested, Lucy advises, as the HIV antibodies, if found, will more reliably indicate the baby’s infection rather than the mother’s antibodies to HIV.

There is some hope now in Malawi for many suffering with HIV and AIDS, the medicines are available free of charge, but the suffocating grip of poverty prevents many from accessing the drugs for want of a fare for a bicycle taxi. Malawi is the third poorest country in the world, with an average income of only $580 per year, less than $2 per day, and a plummeting life expectancy, now some 37 years. For now the ARV treatments will suffice, but it is only to be expected that HIV resistance will occur in the near future, and then the future of my generation here is dismal, as second and third line options for treatment are currently unavailable; some twisted imbalance between the “haves” of the western world and the generic “have not” options of the developing world. Even though there is limited availability of treatment, the culture of bewitchment and stigma that surrounds HIV here means that many do not seek help until it is far too late for salvation.

Palliative Care is the only hope for the many souls suffering needlessly in the mud huts scattered like anthills over the landscape. By definition palliative care provides alleviation of not only physical pain, but also the spiritual and psychosocial suffering associated with the end of life. This is what Lucy and Tony Finch aspire to offer in the Salima District in central Malawi. Five years ago Lucy, a Malawian nurse, and her English forester husband, Tony, retired to Lake Malawi. Word soon spread that “Dr. Lucy” could help, and the courtyard of their home was filled each morning with the ill and desperate. Lucy’s passion for her work in palliative care gave birth to the Ndi Moyo Palliative Care Centre (www.ndimoyo.org); a day centre which forms the nucleus of an incredible home based palliative care service for the surrounding area.

For the last week we have been privileged to accompany Lucy on her rounds of some of the most remote and basic villages I have ever witnessed. The realities of people dying in their mud huts has hit us hard, and for each of the patients I describe below I am certain there are many more that are not receiving the incredible love and care that Lucy offers. The last few days have been indescribable intense, the experiences offered unlike any which we would ever experience in the western world, and I’m not at all sure how to make sense of these for mass mailing so I am just going to ramble.

Let me try to recreate several of the disturbing impressions of the last few days (names have been changed). The first home based patient we visit is Mary, a woman about my age with advanced cervical cancer, who appears in front of me as if a ghost as my eyes adjust to the light in the dim, crumbling mud hut. She is an emaciated skeleton, breasts hanging limply and with futility on her corrugated rib cage, too weak to remain seated for more than 5 minutes. When I take a picture of her and Lucy, at her request, she said in Chichewa “I am finished”. Four generations of women in her family sit in the room watching her die, cervical cancer being a common death sentence for the women of Malawi, a result of the high rate of infidelity, sexually transmitted diseases, HIV and resultant sickness.

Our next patient is James, a young, good looking, emaciated man, covered with the tell tale spots of Kaposi’s sarcoma, a late complication of AIDS, painful and loaded with stigma. His young wife crouches in denial beside the hut, playing a dangerous game of Russian Roulette with her six month old baby.

Gracie is an inpatient in the TB ward and her cachexia takes my breath away, she is impossibly thin and fragile, her frame disguised by the gently folds of the bed’s feeble blanket. Tomorrow she will somehow cling to a local minibus for an ultrasound appointment in Lilongwe, to determine if the mass in her sunken belly is a tumor or more TB.

Then there is Katy, a 12 year old girl whose life has been smothered by a horrendous case of cancer, Burkett’s Lymphoma. She lies in bed covered by a thin, dirty sheet, a sparrow’s frame supporting the gross deformation of her face caused by the tumor. Over the last six months her face has become increasingly swollen, her left eye protruding out of the socket and she has freakishly, disturbingly morphed into something unrecognizable, were it not for the sweet innocent voice emerging from her warped little mouth.

Janet is a 28 year old woman who has had 6 children, only her oldest son, 11, survives. She is HIV + and deaf from bacterial meningitis, but still manages to communicate that she keeps hearing her dead babies calling her.

Our last patient today is Samuel, a 31 year old, single man who presented to the hospital 6 months ago with left leg swelling and discomfort. I don’t know how to accurately describe the aggressive, unrelenting Kaposi’s sarcoma that has affected his leg, which is now blackened and swollen more than 10 times its normal size. He suffers multiple infected retched nodules that imprison him in his mud coated cell, even if he could still walk. The swelling and edema has extended up to his chest, necessitating multiple medications to keep him alive….for what purpose.

And then there is a “good news story” Annie, who is an AIDS patient, 10 years old, but built like a 5 year old, the skin on her arms horribly scarred due to a brutal case of shingles last year. Her mother and 5 siblings are dead, and her father has abandoned her, and is on his death bed, but at least she has grandparents that are caring for her and the availability of ARVs.

Though the descriptions above are difficult to read, let alone comprehend, they are the reality of the patients that Lucy assists every single day, bringing comfort, peace and dignity to their lives. We are so grateful for our community’s generous donations, which have allowed us to support Lucy and Tony’s work, and they are thrilled with the $6000 donation which will provide much needed medications, and further palliative care training for their dedicated team of nurses.

It is difficult not to be swallowed by the wave of grief that I have felt for these people, and I try desperately to cling to the life raft of positive examples; the success stories in this pandemic. The Tikondani Project, in Lilongwe is an inspiring example of the serving of the neediest, and perhaps most deserving, members of our global community. Street children in Malawi are displaced by many factors, the death of their parents, physical or psychological abuse, banishment from their communities because of perceived bewitchment, child labor, or children simply wandering from their homes and becoming lost. These children would have no future on the streets of Lilongwe, eventually turning to theft or prostitution to survive.

The Tikondani Project assisted over 400 new children last year, and reintegration of these children into their natural environment remains the goal, with intensive involvement of the seven social workers employed by the project. For various reasons there are some children who cannot be reintegrated, and currently the project assists 32 of these children by enrolling them in boarding schools to ensure a positive future. Many of these girls and boys are severely traumatized, and behave accordingly, but they have all made remarkable progress, both academically and in terms of emotional balance and social competence.

Today is a day of rest on the shores of Lake Malawi, which stretches 580km up the length of the country, and at up to 100km wide, is the third largest lake in Africa. Sipping our coffee this morning we glance over the still lake and witness what seem to be numerous black smoke plumes in the middle of the lake. Tony reassures us that these are not distressed fishing boats alight, but merely 200 foot high plagues of lake flies; swarms of tiny flies that engulf anything they pass over in an impenetrable wall of insects. Even 15km away they portray a formidable foe, and I am grateful for the shifting wind that keeps them at bay. This inland freshwater sea also boasts a huge variety of colorful fish, although the fringes of Cyclone Favio, currently creating chaos in our next destination, Mozambique, have clouded the turquoise waters. We forgo the snorkeling trip offer, and instead pile into Tony’s well loved Landrover, as I have a hand at four-wheel driving in the wilds of Malawi. Our first destination on this ecological tour of the surrounding countryside is the Stuart Grant Fish Farm, where a seemingly endless row of concrete bunkers houses a kaleidoscope of tropical fish, well on their way to their next adventure, a fish tank in Japan, Germany, even…Canada.

Satiated by the saturation of these innocent prisoners, we depart and venture down several goat tracks before finding the next safari locale, which funnily resembles a high security prison from the outside. Here a crocodile farm thrives, with some 13,000 sharp toothed crocs, ranging from a cuddly foot long to a terrifying twenty five year old patriarch. It is the stuff of horror flicks, thousands of crocs swarming in shallow ponds, climbing on top of one another in an effort to reach the cool of the shade. Predictably this is not a conservation effort; as soon as these crocs reach 45cm around the middle (don’t ask me what kind of karma has you measuring the circumference of a croc, never mind the job of wrestling the eggs away from the protection of the steel trap jaws of adult crocs) they are relieved of their lives; the skin sent away to France and the US to be made into fashionable handbags and shoes.

The variety of the African experience never ceases to amaze me. A few more days of enjoying Lucy and Tony’s incredible hospitality, and we are off to Mozambique, although that portion of the trip is questionable now with flooding and cyclone activity, as well as torrential rains! Will keep you posted as often as we can. Thanks for listening.

All our best,

Anna and Beth