Compassion is complicated...

So I am reading an article in Newsweek about oncologists and their patients. The article talks about the importance that compassion plays in the quality of care a patient receives. The article is filled with statements from patients who were grateful for their doctors’ attitudes and felt encouraged by them. I automatically think back to my experience with Peter’s doctors. Having experienced both indifference and caring attitudes through my husband’s illness, I feel I have a unique perspective.

Peter’s cancer was found after getting an MRI for a suspected slipped disk. A day later, we got a call from the Orthopedist in Concord, stating that though his spine was fine, they had discovered a pelvic mass. The doctor gave us the name of a surgeon in Boston after informing us that there was no specialist in the state of NH that dealt with this type of thing (our first clue that this might be something serious). He apologized for doing this over the phone but that he was going on vacation and needed to tell us before he left and then hung up. This conversation took maybe 2 min….and only after my husband hung up the phone did we realize how little information we had. All the Dr. said was pelvic mass. Was it suspected to be benign? Was it a malignant cancer? He didn’t say how big it was or whether that was indeed the source of Peter’s pain etc. It took over 2 weeks to get an appointment with the orthopedic surgeon at Brigham and Williams Hospital.

On the day of our appointment, after waiting most of the morning to be seen, (you are forced to be patient when you are a patient), we were finally put into an exam room where there was a computer (delightful how the medical profession has embraced technology) displaying Peter’s pelvic x ray. The monitor had been left on by accident I am sure. Up till this point we knew nothing , had been given no details and had felt only an inkling of the seriousness of our situation. Having a medical background and much experience with taking, developing, and reading x rays, I found myself staring in horror at THIS x ray, trying desperately to come up with some alternative explanation as to why half of Peter’s pelvis was missing. I instinctively KNEW what I was seeing but couldn’t bring my self to believe it, nor had I the strength to explain what I thought I was seeing. Now if this wasn’t bad enough….we were left to wait yet again for over an hour…just the three of us, Peter, myself and this horrible x ray. So we sat and made small talk ,trying to ignore it. At one point Peter said “Wonder why we can’t see part of my pelvis there?” I said in a wishful tone staring at the floor, that perhaps the mass was in front of it, blocking it’s view.

It was pure torture waiting for the specialist. But finally he showed and very detachedly and plainly told us about the tumor. It was the size of a grapefruit. It had invaded and eaten away, literally, replaced a significant portion of his pelvis. It was an extremely rare and aggressive type of Sarcoma. It had a high rate of metastasis and that he hadn’t seen a case where the tumor was this large and hadn’t already spread. So an entire body scan was necessary. Now truthfully, I don’t mind when a surgeon lacks a bedside manner. I want a surgeon who is calm cool and collected. I want him to be decisive and confident to the point of arrogance as to his ability. So any lack of compassion on his part is forgiven in my mind. The x ray snafu, though certainly not compassionate, was hopefully a simple mistake.

So now enters Peter’s oncologist. We had a surreal moment at our first meeting. After simple introductions Peter with his charming big grin and determinedly positive attitude said “So… what’s the plan?” The Dr. dramatically took off his glasses, fell down in his chair, put his head in his hands and in a defeated tone said “I don’t know. I don‘t know. I just don‘t know.” Peter and I looked at each other, horrified by his reaction. Now maybe it’s me, but that type of bedside manner didn’t just lack compassion, it was cruel. I mean, how can you have confidence in a Dr who has admitted his defeat before even entering into the battle? SO I knick named him Eeyore. He treated Peter with no hope or expectation of his survival. I would have changed Dr.‘s but Peter decided to see past his defeatist nature. I remember when we asked Eeyore if he thought another round of chemo might shrink the tumor more. He merely shrugged his shoulders with a bemused smile and said he didn’t think it would make much of a difference but that we could if we wanted to. The subtext in my opinion was that it was a lost cause either way.

I remember going back to the Surgeon with the results of Peter’s scans and how surprised he was to see that they were clean and that the tumor, despite its size seemed to be completely contained. That is when I dared to hope that Peter’s case might be the exceptional one. For some unexplained reason his body had been able to contain this cancer and would keep doing so till he got his surgery. I had always felt that he had led this sort of charmed life and though as horrible as this experience was, I now dared hope he would pull through.

That brings me to the next chapter of the story. We decided to pursue a second opinion from another excellent orthopedic surgeon at MD Anderson in Houston TX. The surgery Peter was to require was radical to say the least. The choices were between an internal or external radical hemi pelvectomy. And Yes it is as bad as it sounds. So we wanted a second opinion. I can’t say enough good things about MD Anderson. They were professional, friendly, optimistic, and COMPASSIONATE! Unfortunately he took a turn for the worse during our visit and we ended up staying there to continue receiving treatment. His new oncologist was refreshingly lovely, gentle, and encouraging in manner. She wasn‘t going to give up on us! But in the end, those very qualities were largely responsible for even more pain and suffering.

I think a compassionate attitude can take many forms. What is perceived as compassionate depends on where the patient is emotionally as well as physically.. In the beginning, so much of our energy went toward fighting the doctors’ negative attitudes. Then at the end, we were encouraged to fight fight fight! and deny the painful reality that despite our best efforts, the end was coming. I wish we had found the optimistic doctors in the beginning and the realists at the end of his illness, who could recognize when it was indeed time to give up. There is such a fine line to walk between providing hope to a patient and their family, and knowing when to encourage acceptance of the end. To engage in a truly compassionate doctor patient relationship one needs to consider both the patients’ emotional and physical limitations and also be able to answer the question; at what point is it appropriate to stop encouraging a person to fight for their life and embrace and plan for a “good “ death.

If that even exists.