The doctor with the degree in difficult conversations
AKUH's Quality of Life program is run by Pakistan's only Paediatric Palliative Care specialist
Dr Shahzadi Resham is flapping around the Department of Paediatrics & Child Health excitedly. The lithe palliative care physician reminds one of a long-legged flamingo—not unlike the faux pink ones in the play area on the clinics floor. The image of her as a graceful bird fluttering in excitement is abetted by a silken dupatta that streams behind her as she sails past the faculty desks. She has good reason to be so happy: her 14-year-old patient Amir’s dream is coming true: He is off to see his favourite team play at the PSL in the National Stadium right behind Aga Khan University.
Dr Shahzadi Resham checking the tickets to PSL at the Department of Paediatrics & Child Health on March 7, 2024. Photo: Rahim Sajwani/Department of Paediatrics & Child Health
Amir was diagnosed with Acute Myeloid Leukemia or AML about a year ago. “Universally, AML is a difficult leukemia to treat,” says his oncologist Dr Sadaf Altaf, whose manner of speaking, in measured tones, is oddly comforting given the subject. “So up front, we knew that his case would be a challenging one.” Generally, all leukemias in children are called acute leukemias because they come on suddenly and so the duration of symptoms is short, she says.
“So it won't be months, it will be weeks to days.”
This is why Dr Sadaf Altaf decided to call in Dr Shahzadi Resham, who runs the Quality of Life team at AKU and is the only paediatric palliative care physician in Pakistan. The perception that Palliative care is just for people who are dying comes from the historic origins of the discipline. But it has evolved to now mean an effort to add quality to the quotidian of children with life-threatening and life-limiting illness.
The Quality of Life team prepares a family with anticipatory guidance on what's coming next in a difficult journey. Often communication dwindles between the parents and the sick child. They may live together but they don’t come together because they are trying to protect each other from pain.
Palliative care physician Dr Shahzadi Resham and oncologist Dr Sadaf Altaf with Amir, 14.5 years, at the Onocology daycare on March 8, 2024. Photo: Rahim Sajwani/Department of Paediatrics & Child Health
“I tell them that it has been [established] that parents who haven't shared information with their children regret it later,” says Dr Resham. It has also been found that parents appreciate a care provider being honest and transparent.
The AKU Quality of Life team thus spends time listening to the family, talking to them independently and then to the patient. “What ends up happening is that the family reaches a certain comfort level where they feel they can gently break the news to the child or talk about the difficulties in the diagnosis and treatment,” explains Dr Resham.
In fact, palliative care physicians are trained how to communicate with children in an age-appropriate manner. According to Dr Resham, we tend to assume children think like us but they don’t think that far ahead.
Quality of Life care is not an easy specialty to pursue. It was not actually Dr Resham’s first choice. She wanted to become a paediatric haematologist oncologist, who treats the cancers of the blood. It was her mentor, Dr Sadaf Altaf, who suggested this virtually unknown discipline in Pakistan. “Then I asked myself, what made me do haematology or oncology in the first place?” says Dr Resham. “Was it the chemotherapy? Was it the bone marrow transplant? The fancy treatment? Or was it the connection with the patient and the family?”
After training with Dr Mohammad Atif Waqar, who headed Adult Palliative Medicine at AKU, in 2018, Dr Resham headed to St. Jude Children Research Hospital in the US for a year-long clinical fellowship. She then returned to set up the Quality of Life team in 2022 in the departments of Oncology and Paediatrics & Child Health at AKUH.
Dr Resham first met Amir five months ago. She started by getting to know him as a person rather than as a patient living with AML or leukemia. “He came across as a very silent, quiet and simple, boy [who] loved to play cricket,” she says. When he got sick he stopped studying, but he never stopped playing cricket.
Amir started to privately and confidentially share some of his worries with Dr Resham. “Throughout the conversation my role was to be a sounding board and help them navigate this difficult time,” she explains. Part of her job is to also help manage his symptoms (nausea or pain etc.) and follow up with his oncologist. She talked to the family when they found out over time that the disease was progressing.
Dr Resham talked about memory-making and helping the family spend time well together. During one of these conversations, Amir told Dr Resham that the Quetta Gladiators was his favourite team. “Would you go see them if you could,” she asked.
She and one of the senior managers at the Department of Paediatrics & Child Health, Khalid Chunara, then scrambled to get their hands on tickets. Dr Resham began planning a week ahead. Amir would need to get a platelet transfusion so he didn’t feel sick on the day of the match as blood cancer tends to lower haemoglobin levels.
The day he came in for the transfusion, Dr Resham pulled Dr Sadaf Altaf out of a meeting and they both headed to the second floor of the Ibn-e-Zuhr building. Amir was sitting cross-legged on one of the Oncology daycare recliners. He grinned when Dr Resham gave him the envelope, almost as if he knew.
“Who do you love the most in the Quetta team,” she asked him.
“Mohammad Amir,” came his reply.
“Aha! Your namesake!”
On the day of the match, Dr Resham was so impatient that she called Amir’s father directly to get an update. She was in front of the television, scanning the crowd in the futile hope of seeing him there. “Yes, yes, yes! He's in the stadium,” his father reassured her. “He's watching the match!”
On the tenth of March, the Quetta Gladiators played the Lahore Qalandars. Quetta won by six wickets on the very last ball of the match—and Mohammad Amir took one wicket.
