“She’s getting better!” Ruben emphatically exclaimed, as he grasped his wife’s hand.
Dr. Les, the palliative care specialist meeting Cathy for the first time, asked, “Can I ask in what ways your wife is getting better?”
“Well, her cancer doctor says she’s getting better,” Ruben paused and slowly added, “The last CT scan showed the chemotherapy is working, and there are less spots.”
“So it sounds like her scans are improving,” Dr. Les paraphrased.
“What about Cathy’s strength and activities? Have they improved too?” Dr. Les asked.
“Well... I guess not really,” Ruben considered his response, “She’s slowly gotten worse the past year. She mainly sits in her armchair and watches TV. Sometimes, she stares off into space. On days when she’s really tired, I have to help her stand up and help her eat. She’s lost 40 pounds.”
“So, it sounds like Cathy's activities and weight have decreased rather than increased as you might have hoped they would," Dr. Les said softly, "How about Cathy's quality of life? What do you think she enjoys these days?”
Ruben shook his head. “Nothing. She doesn’t have quality of life.”
Dr. Les waited to see if Ruben would elaborate. When Ruben remained silent, she said, “It sounds to me that when Cathy's cancer doctor says Cathy is getting better, she's looking at Cathy's scans rather than Cathy as a person. Does that sound about right to you?”
“Yes!” Ruben nodded, “That sounds about right. Cathy says she doesn’t want any more chemotherapy, but she doesn’t really understand what’s going on. The chemotherapy has affected her thinking, so I have to go with her to all the doctors’ appointments and make decisions for her. Honestly, I don’t know what to do. She’s doing worse, but the doctor says she's doing better...or at least, her scans are better. What should I do?”
When we see a disease – cancer, dementia, end stage kidney failure - changing our loved one and taking away their strength, their vibrancy, their alertness, we may want to do all we can to eradicate that disease.
We think, “If we get rid of that cancer / halt that dementia / fight for a kidney transplant, maybe this person I love will be more like the real them.” Many would likely attempt almost any medication that claimed to fight that disease.
Sometimes we become so focused on conquering a disease that we may lose sight of why we started disease-fighting treatments in the first place - to have as many "good" days as possible with loved ones, in whatever way a "good" day is defined (and "good" days to is often defined as days with increased strength and energy, increased alertness, increased activity, less pain and other uncomfortable symptoms, and overall a quality of life better than that on the day we started disease treatment).
As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I often see patients whose prognosis is "the same with or without chemotherapy" adamant about continuing cancer therapy despite worsening fatigue and quality of life because eradicating the cancer on their CT scans and MRIs has been the primary goal for so long.
If they are given the opportunity to pause and step back to examine their quality of life, their values, their goals, and what's most important to them (read Post 54: Why Should I Care about My "Goals of Care?"), they may realize that they really do not want to "treat" the MRI anymore. They might say, "These medications and procedures for my disease [cancer, multiple sclerosis, liver failure, ____] are not getting me the quality of life that I want. At this stage in my life, I want to focus on comfort and maximize quality of life with my family and friends. I wonder how I can get that."
If strength, alertness, and appetite are worsening despite (or because of) disease-fighting treatments, and a person decides that they want to transition from "fighting" that disease that they see on CT scans or MRIs to primarily making the best of each day, they may realize that their goals are now more in line with those of the hospice philosophy (read Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2). This realization may allow them to choose the type of medical care that no longer makes them feel "stuck on a merry go round of clinic and hospital."
No matter the medical condition or disease stage, an important part of advocating for the medical care best for you is to evaluate the realistic potential benefits, realistic potential burdens, and realistic potential risks of any major medical decision (read Post 16: Medical Decision Making 101), even if it pertains to “cutting edge” technology or the “latest” medication. And this evaluation may mean frankly examining whether you are seeing benefits, or your MRI.