A client--I’ll call her “Debra”-- inquired anxiously: “Do you have time for me?”
Debra was suffering from a chronic illness. There was no consensus among her doctors as to either the cause or treatment for it.
Her first question told us so much: “Do you have time for me?”
It was a central point for her. Debra wanted to be sure we could dedicate the time to research her condition, find specialists for her to consult and treatments for her to consider. Perhaps most importantly, she wanted to know that she would be listened to and her medical concerns acknowledged.
In medicine, time is being sacrificed to the gods of efficiency. As clinicians rush from one appointment to the next, some patients feel like they aren’t getting the full story on their health. Instead of obtaining peace of mind, they can be overwhelmed with a sense of dread and anxiety.
Like our client “Mary,” a 50 year old mom dying of ovarian cancer, who lay in a hospital bed in Boston. Neither she nor her husband understood, at that point, the dire nature of her prognosis; they were just trying to get their questions answered by their doctors. They shared their difficulties getting information with their social worker, who noted in the hospital record: “they asked one of their doctors if he could answer some questions.”
“I have one minute,” he reportedly answered. “One minute. What is your question?”
Mary and her husband reached out to Boston Health Advocates to arrange for a second opinion and to get her questions answered. Their questions ranged from--what is this cancer? (the doctors’ notes and the pathology diverged on this point) to--what was her prognosis?
At our urging, a new oncologist eventually clarified her diagnosis and shared her prognosis with her. She had three weeks to live, he estimated. The chemotherapy that he was proposing would carry significant side effects and had a high risk of failure. Mary decided to spend the last days with her family at home, not in the hospital--and we successfully advocated for her choice. Mary returned home on hospice care to spend her few weeks with her three children and husband.
The point is that all of these choices are valid--but that Mary didn’t even know these were her choices--or how to make them happen.
By taking the time to address these key questions, we supported our client and her husband while they made a decision that was right for them.
Time is a precious commodity for all of us, and dramatically so within the practice of medicine. Clinicians and patients alike complain of the lack of time to attend to care, conversations and connection. Healthcare advocates can help bridge this gap by making time to talk things through, by drawing up a list of specific questions for a client’s physician, by defining our clients values and goals so that their medical care reflects those goals. We catch issues that might otherwise fall through the cracks--like clarifying a diagnosis and treatment as in Debra’s case, and prognosis, options for care and end of life wishes, as in Mary’s case. We create a bridge between the clinician and the patient.
As physician health advocates, our goal is to make clear the medical world and provide an objective point of view for our clients so that they know what is happening, why it is happening and what their options are when confronted with a serious illness. We help ask the tough questions--and take the time to research the answers. By offering knowledge, support and clarity, we can help give peace of mind; when a client is feeling defeated or unheard, we can be a megaphone for the patient voice.