Although in the grand scheme of things, I have not been a physician for that long, I had a surprise at work yesterday that I wonder if will ever happen again. I was paged by my nurse that a patient was waiting for me in the lobby. Considering I have on average 25-30 patients receiving treatment per day and each at various stages of therapy and side effects, this is actually not that uncommon. I walked to the lobby and before I could turn my head, a woman said with a quivering voice, “Hi Dr. Feddock, I’m not sure if you remember…” She didn’t have to finish her sentence – as soon as I saw her face, albeit with tears running down her cheeks, I knew who she was. And for the sake of maintaining anonymity, we’ll just say she was the mother of one of my most memorable patients – a young woman whom I treated for cervical cancer, and also one who passed away 8 months ago.
Just to provide some context. I received a phone call from one of our Gyn Oncologists in January of 2013. I was told over the phone, “Jonathan, I have one of the most unfortunate cases and I need your help with her. She’s a beautiful young woman, here with her mother and husband, she has two kids at home. I just diagnosed her with cervical cancer, both the kidneys are blocked, and there’s no way I can do surgery. She’s bleeding quite heavily right now, we’re going to have to do radiation.” Of course it was a Friday afternoon, so I rush to meet this new patient and get the process moving. Upon entering the examination room, I see a young woman, obviously terrified, with her husband on the right, and her mother on the left. All of them are crying, in shock with the news they have just been given. I introduce myself, do an exam, and as I begin to discuss everything with them, she tells me she doesn’t want to here about prognosis, just tell me where the cancer is and how we are going to treat it. I did just that, and proposed we get started immediately. Unfortunately, the information I had at that time was just the tip of the iceberg. When I brought her down to my department, I performed a CT scan which is needed to setup radiation treatments. My scan covered a much larger area than the one from the outside hospital. Because now I was not only seeing a large cervical tumor blocking the kidneys, but I was also seeing at lung and liver metastases. There were too many to count. I’m not one to withhold information from my patients, so I was very upfront and I shared the scan with her and her family. She just shook her head and said, “well we better get started with the radiation then, shouldn’t we.” I did begin radiation to her pelvis that afternoon, but I wish that was the last of the bad news. Over the weekend, more scans were ordered to better characterize what was in the lungs and liver. In doing so, we also found metastases in the spine, one of which was compressing her spinal cord. Needless to say, more treatments were added over the weekend. To make a long story short, this poor woman was doomed from the get-go. Her cancer had already spread so extensively before her diagnosis that there was no treatment that was magically going to make it disappear. However, she wanted to fight, and if I were in her shoes, with a family and young children – I would want to as well. We gave her a full course of radiation to the pelvis, to the chest, and to the spine to cover the main areas. She then immediately began a very difficult course of chemotherapy – which after 2 cycles, developed a terrible complication – a bowel perforation. She required surgery, then more surgery, until finally she ended up essentially stuck in the hospital. She was unable to receive chemotherapy, and her cancer effectively continued to grow until she eventually died 8 months ago.
Now, back to my visit from her mother. I could tell immediately that her mother was not mad at me, or there to lay blame. In fact, quite the opposite. She asked me very politely if we could speak for a minute. I walked her over to one of our consultation rooms, where she immediately began to tell me that she has been feeling so guilty these past 8 months, because she felt like she didn’t do enough for her daughter. Specifically, she described the day that her daughter complained of abdominal pain and they weren’t sure if it was normal or not. “We waited 2-3 hours before calling and coming into the emergency room. Do you think if I brought her in earlier that day then things would have been different, and she’d maybe still be with us?” The day she was referring to was the day that her daughter developed the bowel perforation.
We ended up talking for about 20 minutes, the majority of which she was crying. I was really surprised at how much responsibility for her daughter’s death that she placed on herself. That may sound trite considering I too recognize and share the sentiment that no parent ever wants to bury their children, but at the same time, I felt surprised that she did not look towards me as failing her, and really blame me for not saving her daughter. I think a lot of patients and their families look to cancer physicians as the doctors who can save them. Its very hard to honestly tell a patient that all of the treatments in the world are probably not going to change the fact that they will die from their cancer. With respect to her case, she kind of gave me the easy way out in the beginning by telling me she didn’t want to talk about prognosis, but instead to concentrate on the treatments to be performed. I also felt responsible because I actually did try as hard as I could to deliver aggressive radiation treatments, and in the process even I begin to develop hope that just maybe we could see a miracle. Her daughter reminded me of my wife, and I treated her like I would my wife, and yet that didn’t work. Because of my medical knowledge and experience, I knew the treatments were not curative in the beginning, but even I carried some hope, and in the long run, I too feel responsible. Instead of questioning the timing of bringing her into the emergency room, I wonder if the outcome would have been different had I treated more areas, or less for that matter.
Our conversation yesterday also reminded me of the last time I spoke with her mother, which was also the last time I saw my patient. It was about 2 weeks before she passed away. I went to visit her in the hospital, purely for personal reasons as she was no longer receiving treatment. She was so heavily medicated that she could hardly talk coherently, but she recognized me as I entered the door, smiled and immediately tried to talk with me. She didn’t look like the same person anymore. She had lost so much weight, her hair was gone, she had iv’s and tubes everywhere. She was a very active woman before her cancer, and now she was restricted to the bed and short distances. She had previously been very talented at riding horses and even performed in competitions. She told me about roping calves and running between barrels, and a little more about her kids, and how they were learning to do the same. She slurred her speech the whole time, and I could tell by the pauses and hesitation in her voice that she was very tired, as in her body was showing us there was not much of a fight left. I stayed for about 20 minutes, and on the way out the door, I knew it was time to have the discussion with her husband and mother.
I took them into the hallway where we could talk alone, and I was very honest with them. I knew the end was very near for our girl. She was already receiving assistance from hospice, but it was time to start getting affairs in order. Now I have given the hospice talk and the end of life talk many times, but today I gave very different advice, and this was probably the hardest bit of advice I have ever given a family, as even I teared up while discussing it. She had very young children, young enough that they probably won’t have many memories of their mother. I talked with them about having her write some letters, maybe a video, and create some memento’s that they could share with the kids when they get older. That day I realized that even though they had been told for several months that her cancer had spread extensively, given inferences that this was not curable, I think it wasn’t until that afternoon that they realized that she wasn’t going to be living much longer, and the idea that she was not going to beat her cancer was real.
We spent upwards of 45 minutes in the hallway. It was a Friday afternoon and at the end of the day, which is the only way I was able to give that kind of a commitment, and most of it was spent trying to console them. And as hard as it was for me to tell them about having her make mementos for the kids, I know it was so much harder for them to hear it and to comprehend what that actually means. I often questioned myself if I was right to give that advice, and wondered if it angered them that I was so blunt. My patient was discharged shortly after our last encounter, and she died at home within 2 weeks, so I was never able to follow-up on our conversation. I never saw them again until her mother arrived in my clinic yesterday. I don’t know if they took my advice, and frankly, I don’t know if they even had enough time when it came down to it because she really progressed quite rapidly.
My wife has often told me that I carry too much stress and anxiety home worrying about my patients. On a few occasions, she’s given me a stern look when I tell her I have to leave to go to one of my patient’s funerals. I don’t go to all of them simply because I can’t, and frequently I do not find out in time, but I wish I knew about this patient’s funeral, because I would have liked to have gone. When I was able to make the time to learn about her, and get the stories from her mother, her husband, and herself, it was always fascinating to me to learn about her life outside of the cancer. So often, I see patients when they are at the end, that I find it uplifting to see family members and friends, even at funerals or in the hospital, who are celebrating them and sharing what they were like before their cancer, and it gives me some peace to know that even though they are no longer alive, they are no longer suffering and perhaps I helped reduce some of their suffering along the way.
I don’t know if I’ll ever see her mother again, but it really made me feel good that she decided to come see me in my clinic yesterday, of all the physicians that took part in the care of her daughter. It made me realize that even though I feel like a failure for not curing her cancer, she views me as one of the doctors who tried his hardest and cared the most, and treated her daughter like a person.