"Give us just two weeks"

By Jon Crocker

	Patrick

After suffering a paralyzing injury, all Patrick wanted was "to be taken home to die." PIH's partner organization in Malawi had two weeks convince him otherwise.

“I need to tell you about a patient who needs to come to our hospital in Neno,” said Emmie Kumbikano on a hot morning last October, when she called me on her day off. I was the physician on call in Neno, the district in which Abwenzi Pa Za Umoyo (APZU, Partners In Health’s sister organization in Malawi) is based.

Emmie is a rehabilitation technician working with the APZU-Malawian Ministry of Health team. She had been notified about a patient in Blantyre, the closest sizeable city. A 26-year-old man named Patrick had asked to be discharged from a rehabilitation center – in his words, "to be taken home to die." Originally from the village of Mposadala in the remote mountainous part of Neno district bordering Mozambique, Patrick had moved to Blantyre a few years ago and established himself as an entrepreneur, selling home-cooked treats on the street. Last July, he slipped and fell while carrying a load of sugarcane, seriously injuring his spinal cord. He was left paralyzed for life.

Patrick lay in a hospital bed for weeks, with no available imaging or surgical options. Malawi’s health care system is crippled by a severe shortage of health care workers, and Patrick’s experience at the central hospital reflected this reality. He was only seen perhaps once or twice a week by a clinician. Because of his immobility, he could not feed or clean himself or even change his position in bed. Despite his family’s best intentions to care for him, Patrick rapidly became malnourished and developed severe bed-sores. He was transferred to a rehabilitation hospital where the nursing care was also grossly under-staffed. Patrick’s condition deteriorated. His bedsores became infected and so deep that his bones were exposed in some areas. The nursing staff knew he would likely die soon of sepsis (an overwhelming bacterial infection). Patrick, it seems, sensed this too, and demanded that he be allowed to return to his home village.

When Emmie learned of Patrick’s situation, she decided to use her day off to go and visit him at the rehab hospital. She met a very depressed young man. She tried to convince Patrick to come to Neno District Hospital for care, but he refused--he was tired of hospitals and wanted to die in the comfort of his family. She finally asked him to give the team in Neno just two weeks.  If he still wanted to return home afterwards, she promised to oblige his request. Patrick and his family agreed.

When Patrick arrived in Neno, the severity of his condition immediately became clear. His bedsores were among the deepest we had ever seen. He was feverish, malnourished, weak, and severely depressed. Convincing Patrick within two weeks’ time of the benefits of staying was going to be a challenge.
 
Our team set straight to work. Emmie visited Patrick twice a day to exercise and massage his fingers, hands, arms, legs and feet. She held intensive training sessions with the nurses and with Patrick’s family, teaching them how to reposition him every few hours to avoid worsening his bedsores. The clinical team reviewed the importance of regular dressing changes and placed Patrick on antibiotics, an anti-depressant, and a fortified nutrient diet.

During Patrick’s first week in Neno, Emmie came to me one afternoon. “We need to get him out in the sun. He needs something to pick his mood up.” She procured a wheelchair, padded it with pillows, and from then on took him outside for part of his daily physical therapy sessions. She took him to the local market, where he confided to her that he was scared because people were just staring at him.  She reassured him, told him, “We have to do this,” and wheeled him onto the veranda of a shop and bought him an orange Fanta–“anything to make him feel normal.”

The closest thing to a clinical social work service in Neno, the POSER team was also called upon to assist. The Program on Social and Economic Rights is a group of APZU employees dedicated to providing social support for the most vulnerable and neediest patients. The POSER team conducted a comprehensive assessment, procured new clothes and purchased a portable radio for Patrick to listen to his favorite gospel music and news stations. They also made arrangements for meals for Patrick’s family, given the anticipated length of his stay at the hospital.

After his first week in the hospital, Emmie came to me with promising news: “I got Patrick to smile for the first time today.”

	Patrick and Emmie outside the Neno District Hospital

At the end of two weeks, Patrick told Emmie he would stay on a little longer. His intensive care continued, with Emmie and the clinical and POSER teams constantly looking out for his well-being. Malawi’s hot, dry season was in full swing, so houseflies were ubiquitous and difficult to keep off of Patrick’s seeping dressings. The clinical team procured fly-strip traps and hung them over his hospital bed, and placed a large fan at the foot of his bed to hum over him. Emmie made a deal with him: each day he would tell her one story about something that he noticed or thought about. Arrangements were made for him to be regularly taken to a local APZU community room where he could watch a movie or TV. Every Wednesday he went to a local fledgling library to read the newspaper (someone turning the pages for him). After a few months in hospital, one of the hospital staff suggested Patrick was in need of a haircut, and arranged for this. Patrick established friendships with other patients and the hospital staff. His wounds began to heal. He gained weight. His strength returned, and he began to smile more often.

	Patrick's home village is in a hilly, relatively inaccessible area. His new house is in a nearby village located close to the main road to the hospital.

Today, six months after he first arrived at Neno District Hospital, we are preparing for Patrick’s discharge. Not because he wants to go home to die, but because his sores have healed and he is ready to leave our care. His family members have taken over his daily nursing needs. The POSER team has procured a new bed and mattress for him, and they have seen to the construction of a modest new house near his home village, but much closer and more accessible to the main road to the hospital. A new community health worker, Joyce, has been hired and trained in rehab exercises. She will visit Patrick daily, and will be in touch with the hospital team at a moment’s notice should any problems arise.

Patrick’s rehabilitation is certainly a tribute to his own resiliency and his decision, ultimately, to live. But his recovery and imminent discharge is also a remarkable testament to the collective commitment of the individuals who cared for him. The interventions needed for Patrick’s care did not require excessive sums of money, specialized surgery, exotic medications, or high-tech interventions. Like any of us, what Patrick needed more than anything was the acknowledgment of his humanity, and the care and respect for his dignity as a human being.  He received this in Neno. When PIH’s commitment to do whatever it takes is put into practice, the outcomes are humbling and powerful.

Jon Crocker is a physician working with Abwenzi Pa Za Umoyo, PIH's partner organization in Malawi.

[posted May 2009]