Medical Student Perspective: Lessons Learned from the Other Side
I was going to write about what it is like to lose a parent in medical school, but the more I thought about it, the more I realized how far that was, fortunately, from most students' experiences. So instead, I decided to write about what lessons I learned over the last 12 years as a family member of a patient with a rare terminal illness and hope that others can use these lessons too.
1) Trust your patients and their families: They know themselves and their bodies far better than we do. From "House, MD," to our physical diagnosis courses, to the wards, we are taught that patients lie. I think that maybe that is what the ER physician thought when we brought my father in on July 4, 2001-that his weight gain of 30 pounds in 1 month was exaggerated, that his shortness of breath was not all that new, that the idea that we never ever go to the ER was not all that true. Despite my mother's insistence that this was not her husband's usual self, that something must be wrong, the ER physician simply stated that his new diagnosis of hypertension, type 2 diabetes, and shortness of breath were merely the result of his weight gain and older age (he was 46). He did a chest x-ray to appease us-it was negative, he said. But if we had followed up with the official radiology report, we would have known 2 months sooner that he had a mediastinal mass that was producing ACTH and thus my dad's actual diagnosis was Cushing's syndrome, a diagnosis that my mother, an R.N., eventually made on her own.
2) Tell your patients the whole truth, even the parts that may be frightening or that may elicit questions you may not know the answer to. They'll trust you a lot more for doing so, no matter what the outcome. "These masses are pretty much always benign when they're in the mediastinum." I will never forget the surgeon's words, which were followed by reassurances that our nightmare was almost over-that my father who had transformed into an obese, absent-minded, irrational person would soon return to the father I knew. I will also never forget when he told us after the surgery that, not only was it malignant, he did not get clear margins and no one knew how to treat this type of rare cancer. All the hope that we had had fell away as our world crumbled and he was given less than a year to live. This was not even a possibility before the surgery. While he did not tell us a complete lie, he didn't give us the truth either. We never saw him again.
3) While you may not be able to provide a cure, you can always treat the person behind the disease-something no machine or drug could ever do. My dad's primary oncologist specialized in his rare type of cancer. He was honest with us about the dismal prognosis but also never gave up finding other methods of treatment. He gave us his contact information, including his cell phone number, and urged us to call any time with questions. I think we called the oncologist twice in 10 years outside of normal business hours, and only when my father was in the intensive care unit (ICU) at a hospital that did not know his diagnosis or treatment plan. We are taught to close ourselves off from patients, never to give out our emails or phone numbers. But I will tell you that, as a family member, knowing that I could call him was enough to trust him completely. He understood that treating our family was just as important as treating my father. He also understood that, even though a cure was not possible, treating our emotions, working hard to get insurance approval for medications, and making himself available to us was, in fact, treating my father.
4) When a patient who you are close to is saying goodbye, it is, in fact, okay to cry with them and their family. The last time my dad was admitted to the ICU, his pulmonologist came to speak to us the morning after I had arrived. I knew immediately what she wanted to discuss. I asked her if she minded if I had the conversation with my father, and she nodded. I squatted down in front of his chair where he was resting his head in his hands, exhausted. I simply asked what we are trained to ask," What is your understanding of what's going on, Dad?" His reply was simple and yet heartbreaking, "I am getting ready to pass on." I tried to hold back the tears that were streaming down my face as he confirmed that he wanted to go home. And as my mother, father, and I cried, his pulmonologist, and now friend, cried too. Prior to this, I would have told you that it was never okay to cry with patients-I was wrong. It was more than okay; it showed she cared as much as we thought she had.
5) There is nothing you can say that will make a family member who has lost someone close to them feel any better, but the words you do say can mean very much anyway. My dad's last days were spent in home hospice surrounded by family and friends. He died Christmas Eve and his doctors called to express their condolences. They talked about what a special man he was and how he had touched their lives. People said a lot of things that were meant to help but actually made things worse. "He's in a better place now." "At least he's not in any pain." "I know exactly how you feel." However, the best things were said by people who spoke of who my dad was, what he had meant to them, and how much they will miss him.
Christin Giordano, PA-C, MS2