To this young woman’s oncologist, however, the treatment was the treatment and “that was that.” But, the problem is that is not that. A patient is a patient no matter his or her age or diagnosis. Medication is a crucial part of battling a life-threatening illness, but anxiety about that medication does not need to be part of that battle.
That brings me to an amazing article in the Washington Post, by a primary care doctor. My favorite part of his article was this statement:
“Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”
I believe that empathy and compassion in healthcare provision is the first step towards helping patients be involved in their care. When conveying empathy and compassion to patients, a positive doctor-patient relationship is possible - patients feel comfortable sharing concerns because they know their care provider is listening. This facilitates openness on the part of both patients and physicians. This communication could be even more improved, however, if all physicians would ask patients, in their initial conversations, what they want from their care.
I feel incredibly fortunate to have been blessed by the care of 3 empathetic and compassionate oncologists. However, I also had the privilege of encountering several other oncologists whose work was driven by science more than their sincerity. While I realize being an oncologist requires one to be a top-notch researcher and master of biology, I put out a request to all medical students out there: Do not go into oncology if you are not willing or able to take a patient's emotional wellbeing into consideration. I 100% understand that you may be incredibly familiar with the cellular challenge they are facing, but patients can’t see their cells under a microscope. All they see is their life in shambles: hair loss, vomit, pain, inability to walk, isolation, fatigue, loss of friends, separation from family. To patients, it is the uncertainty and aloneness of it all that can be the most threatening. More importantly, your job involves caring for the family too. And the family doesn't have cancer, the family (parents in particular, when talking about Ped. Onc.), has a loved one on the brink.
So, below I provide 3 examples of truly outstanding care that I received during my cancer treatment - care that helped my emotional wellbeing considerably.
One of my favorite examples of amazing care comes from doctor #1, my first oncologist. He was there in the ER when I came in with funky blood counts. And then he was there for the majority of my treatment. My favorite times with doctor #1 were my outpatient visits with him. I may have been in pediatric oncology, but when I walked into the exam room, he spoke evenly to my mom/dad and I. He saw a mature 13 year old, acutely aware of the severity of her illness, and made sure I was kept involved in it all. He began all his explanations with "so..." (And this is important because he did, in fact, explain everything, unlike some doctors). He taught me all about blood cells and how to interpret my blood tests. He took time to get to know me so he could learn that I wanted to go into medicine and that cancer could become a learning experience for me, rather than just a life-threatening event. He smiled often and hugged too. He held my hand (like actually held it) in one of my most fear-filled moments, and he celebrated with my family and I when I was in remission. When he left to go become an attending at another hospital, I was so sad for him to leave but so happy that he would be able to go and make the beginning of some other teenager’s cancer journey so much easier.
Doctor #2 was my attending and presents another shining example of good health CARE. He walked into my inpatient room the first time, introducing himself with his first name and last name....no “Dr.” prefix attached. He presented himself as a warm and friendly person, not a highly experienced expert, which is exactly what a sick and tired teenage cancer patient needs. He spoke genuinely in terms I could understand, and conveyed empathy in all he said and did.
Doctor #3 was equally wonderful. She cared for me during the end of my relapse treatment and her positivity was essential in those last few months, a time much like the end of a major marathon during which you begin to run out of steam and are only able to keep going thanks to some cheering and positivity from the crowd. She smiled and listened intently to all my concerns, then was always good at providing understandable explanations.
These physicians may not have directly asked me what I wanted out of my care, but they made me a part of the decision making process and made sure to take my emotional wellbeing into consideration. For me, that is exactly what I wanted out of my care. With them, I always felt cared for and cared about.
The general message I would like to send in this post echoes that of Dr. Kaminski, in his article in the Washington Post. Asking patients about what they want out of their care is crucial, especially for teenagers and young adults going through cancer, because the answer may be entirely unrelated to the care involved in the normal course of treatment. And sometimes patients may find it easier to bring up a request for psychosocial support directly to their physician, rather than having to track down their social worker who they don't see one-on-one each week (like they do the physician).
If “What do you want from your care?” got asked more often in oncology, I wouldn’t be at all surprised if psychosocial support became a fairly common answer.