By Dr. Alan Spiro, Medical Advisor, Accolade
My friend Mike Millenson recently tweeted a link to a heart wrenching story by a physician in Australia that deserves to be read by all concerned with patient care. Dr.Ranjana Srivastava tells a story of discovering the true person behind the disease as she treats a woman who has metastatic pancreatic cancer who speaks no English and is awaiting word on her asylum request to stay in Australia.
The story has many levels. At one level it is about the physician who starts out annoyed by the non-English speaking patient who is missing appointments for her chemotherapy. It moves into hearing the story through an interpreter of the patient being a former teacher, escaping from a war zone with two small children, after her husband had been killed. It then moves into the struggles of being a refugee in a strange country, trying to work through the system to take care of her children, while addressing her own probably terminal illness. The author eloquently defines the woman she is treating as one who is “cursed first by geography and then illness” as she communicates a subtle political message about the plight of refugees. She writes,
“You see, most of my friends, even the professional ones, have never met a refugee — they form their views from tabloids, and the increasingly shrill sound bits of politicians. But the thing is, when I look at you, I don’t see a queue-jumping, illegal, unauthorized, undocumented alien or for that matter, any of the names used to strip you of your dignity. I only see a thoughtful woman, a loving mother and a vulnerable patient, with no husband and two young children…”
The story then ends with the physician returning to the safety of what she knows best and is trained to do. “We return to your pain…” The end is one of the powerlessness of medicine in a world that treats refugees poorly.
I empathize with the politics. I am the children of immigrants — refugees from Europe — who escaped the horrors of the pogroms and the Holocaust which was the fate for Jews in Europe in that era. I do believe that we need ways to help those who must flee their native lands to find new and better lives for themselves and their children. We must find policies to welcome those who cross borders; even crossing oceans for a chance and make them part of our own societies.
But I do not have the answers for the complex questions that are part of the dilemmas that governments face as they try to develop answers that are humanistic and also protective of the people they serve. I recognize that there are rarely simple answers to these questions. I am a physician and I must help people in their reality, not in the reality I wish them to be in. I understand the desire of the physician who writes this as a clarion call to be more welcoming to those people who become refugees through their own courage and fortitude rather than any malevolence. However we also must speak for this particular woman in need right now. Changing policy and changing attitudes takes time and this woman with children who has an awful illness has no time. Powerlessness and a return to the purely medical need not be the default for physicians.
Therefore while I sit in awe at the writing ability of the physician, and am truly touched by the patient’s story, I can’t help but believe that it misses a critical element. That element is what this woman, who has a horrible disease that is likely to kill her, really wants and what her goals truly are.
The physician has started to know who this person is, with the help of an interpreter however in this article she has yet to get past the refugee’s story to the person’s real hopes and dreams at that point in time. I can try to guess based on all this woman went through to get her children safely to Australia. I suspect it has to do with building a better life for her children. I want to know what the physician might do to help that woman meet her goals and make a better life for her children even if she succumbs to the disease, as it likely. I want to know if the physician can get past her own comfort level, dealing with chemotherapy, pain management, and the like to address issues such as the help the woman may need in shopping for food, getting her children to school, and planning for her children’s care after her death.
I know that the physician may not be the correct person on the health care team to address all of these issues. Other team members may need to take the lead to find ways to help the patient with these life difficulties. However the physician should note that these important life issues may have priority over pain, disease and treatment protocols for that patient. The starting point for all this must be asking the patient what her hopes and dreams really are as the most valid goals are the patient’s own.
Thus while I want physicians to take political stances as I believe all citizens should, and I want them to be skilled with the biomedical aspects of care, I especially want physicians to know who their patients are as people, as unique individuals and understand the patient’s values and goals. I want physicians to focus on helping people through the difficulty of illness even if other healthcare team members take the lead in addressing those legal, social, psychological, financial and logistical issues. I want every physician who sees a patient to also see the whole person and address all the issues that impact the person’s ability to deal with their life as disease gets in the way. That is what defines medicine as the calling it is and should be.
Dr. Alan Spiro is a recognized expert in the interface between health care delivery, health benefits and finance. He is the Chief Medical Officer of Accolade, Inc.