I recently heard that shifting the verbiage surrounding cancer and the people who are in treatment because of cancer, might be, psychologically, a good idea.
Specifically the language that speaks of their experience as a fight. Some of what I have read says that to say “He won the fight!” makes those who’s loved ones don't, look like losers. It sounds as though if they had fought hard enough, they too could have survived.
Here is what my little itty bitty experience has been when I am with folks who are just walking in, just getting the CT results, just hearing the news. They want to be fighters. Their pioneer spirits come forth strong and courageous and they start to look like Rocky Balboa; watching them, I think I hear Eye of the Tiger in my head.
I believe it is us, the ones who live this work, day in and day out, who sometimes grow tired of the fight song. I think our patients NEED to feel like the true warriors they are. They have to don the boxing gloves and dig deep and find reserves of courage and fortitude and strength they never knew they had. And all along the way, we have to walk the narrow tight rope of discerning when it’s ok to encourage them and cheer them on, and when it’s ok to allow them to rest.
I believe it’s possible, in our efforts and enthusiasm to treat, to lose sight of the quality of the time we might be buying our patients through that treatment. Choices of treatment have advanced to the point of almost always having something we can offer; another course of something, a trial, a new drug, a new way of administering an old drug, a break for awhile so they can heal enough (aka, crawl back from the edge of death) to continue. I know every person involved in treating cancer patients wants the very best for the people they care for. But we don’t get to be in charge of how that is defined, for them. It will vary and be different for different people. What we do get to do, is ask them, explore with them and listen to them. And we can remember that there are sometimes better ways to help than the ones we are most familiar with.
I will always remember the day I had the privilege of watching as three members of our medical oncology team listened to a new patient tell them, in no uncertain terms, he didn’t like their recommended plan of care. He spoke his truth and he was heard. Those three individuals sat in the space of this patients grief at knowing what his decision meant and allowed him to steer the boat. As much as they may have disagreed, they honored his choice to get down to the business of living whatever time he had without the confines and side effects of surgeries and treatments.
They reassured him that as he neared his end of life, whenever that time came, if he was still living in our service area and if he wanted us, we would be there to help guide him. It was stunningly beautiful to watch these three providers, a Radiation Oncologist, an RN and an Oncology Physicians Assistant hear this man and heed his words. I don't know the eventual outcome. I don't know when, if, or where, he died. For the purposes of this piece, it isn't important. This is about seeing a glimpse of the compassion even individuals who are trained to treat can be capable of. They are the ones who kept me coming back day after day. Sadly, that witnessing of deep listening was not always the case. My experiences were more often that surgeons want to do surgery, medical oncologists want to treat cancer. It's what they know and it's what they do. If you are sitting in front of them and you have cancer, they will tell you what the gold standard treatment is for what your cancer is. They may not ask about your life, or your goals, or your obstacles to availing yourself of said treatment, they just tell you what they would recommend. Then they send the nurse in with forms to sign and you are off and running.
I sat once with an old acquaintance just hearing for the first time that she had stage 4 metastatic liver cancer. A very serious diagnosis. I knew her to be someone who lived alone, who practiced alternative lifestyles and living, who had no family close by and very little income. She lived a 45 minute drive from the center. Nothing the doctor asked brought any of those details to light. He was not interested in knowing those things. He didn't see her, he only saw her cancerous liver. When he was finished with his proposed plan of care, I asked if she might have a day to think about it and talk to her parents and her sister in Florida. His response was, “This is very serious. We need to start chemo therapy immediately.” Then he looked at the patient and asked, “What do you want to do?” She spoke for the first time and loudly wailed “Well, I don't want to die!” tears streaming down her cheeks. He reached over and patted her on the knee and said, “OK then. I need to go get those drugs ordered” and got up and walked out. I was stunned, embarrassed, and infuriated. To this day, I hold myself in a kind of shame for not speaking to that physician later and telling him what that encounter had felt like. I was intimidated and afraid. Which just infuriated me even more. And in being those two diabolical emotions, I felt like I let my friend down. Later, we sat in my office and called her parents in Florida. Her only sibling, a sister, lived with them. The two sisters had been alienated and estranged for many years and the tears flowed in this conversation. The family was pleading for her to come home, to do her treatment there, to allow them to care for her.
After that call, she approached the physician and asked if she might be able to go to Florida to see her family before she started treatments and he told her he thought it would be best if she got a “couple of rounds of the chemo” under her belt and then they could discuss it.
My gut was screaming at me. My intuition said, that it was not the right thing for her. But gut and intuition were not enough. My voice remained silent.
Her first round of chemo was brutal. She landed in the hospital and once we got her stabilized, she said “No more”. The discharge team could not release her to go home, she was too weak and too unable to care for herself so she was placed in a nursing home close to the hospital so that, "...when she started to feel better it would be easier for her to continue her treatments”. The treatments she had already told us she did not want to continue.
She died in less than 2 weeks. In the nursing home. Away from her cat and her community with none of the repair work done with her family that might otherwise have been possible.
I know what we say in this work. That people will die, the way they lived. That it is not our responsibility to get mixed up in problems that took years to develop in a family system. And this one still haunts me on occasion. At the same time, I learned from it and I now have a voice and I now know it's ok to use it. People diagnosed with any kind of life limiting illness should be thoroughly vetted before treatments begin.
I believe all the information needs to be made available; all of the options; and with equal weight and equal respect for their choice. Along with the 'gold standard' plan of care, information on Medical Aid in Dying and what their lives might look like if they choose to not do chemo and/or radiation. And honest, full disclosure about what their life will look like, at least temporarily, if they do the chemo and radiation.
Maybe it's just me. Maybe I am not understanding why, in a medical setting, we are so reluctant to talk about the full spectrum of a persons outcome and prognosis. And why we are so reluctant to allow them to do the thing that is up next on their bucket list before we take them down the path of no return....