My patient with an intellectual disability sits in a wheelchair, with enough capacity to mention the word “cancer” and to start crying, but not enough to follow the subsequent thread of conversation in which I tell him that there is no good treatment for his disease. As I struggle to keep my explanation simple and use gestures to describe toxicities like fatigue, hair loss and vomiting, he smiles. The smile illuminates his bright and youthful face and breaks my heart. His sister tells me she has devoted her whole life caring for him and only placed him in residential care when his physical needs grew beyond him. Here, she visits him every day.
Her face registers surprise that in this modern era of medical miracles, I can say there is nothing I can offer her. She nods at my concern that toxic chemotherapy with no proven benefit and the lack of a patient’s ability to promptly report side effects could prove a prematurely deadly combination. She then suggests that even without treatment he could have years of good health; I disabuse her of this notion too and feel woeful. I try bringing him into the conversation but the interpreter tells me the patient keeps repeating the same words. I console myself that those words are not fear or pain.
The consultation is coming to an end and the burden of my momentous pronouncement on a patient’s fate weighs heavily upon me. These days, patients come armed with their rights, readings and demands. They travel far and wide for opinions, leave messages and send emails, all to seek out what’s best, as is their right. Yet, here is my voiceless patient and his soft-spoken sister, dignified, accepting, relinquishing crucial decisions to me, an utter stranger to them an hour ago. When they leave my room, nothing will be the same again.
Being comfortable with a medical decision doesn’t mitigate the feeling of moral responsibility. My patient smiles and regret gnaws at me. Does his disability cloud my advice? Does it render his life less valuable? In fact, he seems more adored and cherished by his family than so many others. The people with the least voice need the most advocacy but what form should that advocacy take? Perhaps it’s okay to invoke a common (if not universal) view that the consolations of futile chemotherapy are fewer than the rewards of a life lived well until the end. But having known him for an hour, who am I to decide? His sister now expresses a wish to let him be as happy as he is and not lead him towards unnecessary suffering. This seems entirely reasonable but I wonder if she is simply tired and overwhelmed. Feeling stuck, I ask if he has a doctor I can call.
“Oh yes, his GP is great!”, she says, her face lighting up.
I can see why. The doctor happily takes my call and expresses a thorough knowledge of his patient. He is so warm that I find myself telling him about my dilemma. He listens before advising me that chemotherapy would be inappropriate and the patient wouldn’t cope with the toxicities. He reassures me that he will continue to see the patient, thus avoiding the logistics of hospital appointments. The patient listens to all of this without registering too much but his sister is visibly relieved. Thanks to the GP, the air in the room feels lighter and the decision to avoid chemotherapy easier.
Afterwards, I find myself reflecting on the GP’s valuable contribution. It put my own mind at ease but also served the patient’s best interest in a way that I never could have done alone. Yet, it seemed noteworthy because this kind of shared decision-making that involves a specialist and a GP is rare. For all the talk about teamwork, there is a lack of communication between specialists and general practitioners which has a real downside for patients. The growing numbers of patients with chronic and complex diseases needing lifelong management end up as recipients of fragmented care with no single coordinator, a role that has traditionally belonged to the GP. But this is difficult for GPs who are kept out of the loop through delayed discharge summaries, absent correspondence or simply a lack of respect for their role.
A Danish study on the communication between specialists and GPs concluded that specialists find GPs hard to contact while GPs themselves disagree. Merely half of GPs feels their questions are addressed appropriately by the specialist, whereas specialists think this number is considerably higher. Specialists complain that GPs often don’t follow their advice. GPs rate their compliance much higher. Both parties want to talk but in practice, they don’t. Another study on communication between doctors about cancer patients by the same authors revealed similar frustrations.
While the subject of doctor-patient communication has gathered attention, inter-professional communication remains on the sidelines. Hospital-based care often takes place in a vacuum, with the onus on the patient to convey complicated details to the GP. To be honest, there is also a whiff of institutional arrogance in the belief that hospitals are the place where the most important care occurs, which results in GPs being accorded a peripheral role. Contacting a GP is considered an extravagance in a time of pressed resources but as everyone knows, an unsupported patient is far more likely to fail a discharge than the patient who has a trusted GP to fall back on.
But while we hail general practice as the backbone of our healthcare system, it is not always capable of bearing the load. It is indeed hard to track down GPs, especially when they work odd shifts in different clinics. The quality of medical records is variable, in hospitals and in general practice – just ask any doctor grappling with a true emergency. Under current arrangements, not all GPs are prepared to manage chronic and time-consuming medical problems. It’s concerning how many patients freely admit to seeing two GPs – “one for the medical certificate and the other for real problems.” GPs of the second type find themselves overwhelmed. Meanwhile, hospitals get a skewed view because they see patients who bounce back, not the ones who are kept out.
As a hospital specialist married to a GP, I have a close impression of the very different pressures and levers that govern our work. But the only way forward is mutual respect and the appreciation that when specialists and GPs don’t communicate, it’s the patient who suffers.
That evening, I go home feeling grateful that I could lean on my patient’s GP. It eased my burden, helped the patient, and invited prudent use of precious healthcare resources. Yet it’s so easy to let these opportunities slide. No patient should have to remind doctors to write a letter. No doctor should consider one field of work more important or more consequential than another. All of society benefits when doctors talk to each other.
- Ranjana Srivastava is an oncologist and a Guardian Australia columnist