Post by Guest Contributor E Victoria Grover, PA-C, CEO of Full Circle Health Care, an independent family practice
A few years ago I had a new patient, we’ll call her Mary. She grew up in my community in northern Maine but she had lived for many years in Rhode Island, working as a waitress. In her 60’s she developed lung cancer. When she finished her chemotherapy in Rhode Island and was told that she was “cancer free”, she decided to retire and return home to Maine. She never married and had no children, so she hoped to reconnect with family here.
A couple of months after Mary’s “establish care” visit with me, she came in with a new, persistent cough. I ordered a chest x-ray and brought her back to my office to tell her the lung cancer had returned. She was upset, but I reminded her that she did very well with her previous chemotherapy, and I asked her to see our local oncologist for an assessment and possible treatment options. I explained that I would receive copies of all her reports and that I would still continue to see her regularly, to answer her questions, to make sure everything was going along as it should.
A week later and a few minutes after the conclusion of Mary’s first visit with the oncologist, she stood at my secretary’s check-in window, asking to see me–she couldn’t wait until her scheduled appointment. We don’t usually take walk-ins, but my secretary is very good at knowing who really can’t wait, so forty-five minutes later Mary and I were alone in an exam room. Mary said the oncologist first told her he had reviewed all the medical records from Rhode Island that our office had sent him. Then he looked at her x-ray on his computer and with his eyes still on the computer screen, told her that when this type of cancer comes back, even with treatment the best a person can hope for is another 4 to 6 months of life.
“That’s not enough time– I just barely got here!” she said, and started to cry. She believed the oncologist completely. She knew he was a highly-trained specialist who had the power to see into her future. Mary seemed like a very tough woman, not prone to tears, but what else could she do when all her hopes and plans for reconnecting with her family lay in ruins at her feet?
I leaned in and told her that the oncologist knew a lot of very important things, but he did NOT know her future. He knew a statistical probability curve and while it was true that she was somewhere under that curve, he had no way of knowing exactly where. I drew a bell curve on a piece of paper and explained that it was built out of the records of hundreds of thousands of people with her type of cancer. While that told the oncologist something about her chances of living or dying in the future, there was no way for him to know exactly where her particular place was under that curve. I placed a small “x” under the first half of the bell curve and told her that she could be one of the unlucky people who died sooner than the midline of 4 to 6 months. But she was equally likely to be someone who lived longer than the average patient. I showed her the long tail of the curve, stretching out towards 8 months, 10 months or more of life, and tried to help her see the possibility that her “x” might belong to the farthest-out point of that long, thin tail.
I’d done this many times before to help patients understand the medical probabilities that loom so large in many specialist/patient conversations. This time it wasn’t working—Mary couldn’t grasp it. Maybe it was because she’d only been my patient a few weeks, or maybe she wasn’t ready to learn statistics. But then I thought of something she might be able to understand, despite her fear and grief. I put my bell curve aside and asked Mary if she’d ever heard about Seabiscuit.
Her crying slowed a little. Yes, she told me, she did know about Seabiscuit—she saw something about him on TV while she was still living in Rhode Island. After that she had asked her old boyfriend, who liked to hang around the race track, if the story was true and he told her all about the famous race horse.
I asked her to remember what the professional, highly trained and very well-paid horse racing experts said when they evaluated Seabiscuit–how they looked at the horse’s bowed legs, the wobbly way he ran, his lousy pedigree, and they all predicted he’d be a big flop, a waste of anyone’s money. But what actually happened when he started to race? There was more to Seabiscuit then the experts could see. He won his races, over and over again, and he became a legend.
“You’re like Seabiscuit before he ran in any races”, I told her, “we only know the barest statistics about you. We don’t really know YOU at all. We don’t know what you’re really bringing to this race. ” Mary had stopped crying. She asked a few questions, and then finally understood. At first she didn’t want to go back to the oncologist, she was mad at him, but I told her he was a good oncologist and we needed him, we needed his knowledge and advice, and the treatment that he offered. I promised her that I would continue to meet with her and help her understand what was happening in her treatment. She went back to the oncologist, had a course of chemotherapy and radiation over the next 4 months and did very well. We celebrated when she crossed over the 6 months point, healthy enough to walk a mile and put on a Fourth of July party for her nieces and nephews.
But at her next visit with the oncologist, he told her that her cancer had started growing again. He advised a somewhat experimental course of chemotherapy. After some discussion with her family and with me, Mary decided to give it a try.
After only 3 out of the 8 planned treatments she was so weak and sick that she needed a wheelchair. She was too nauseated to eat, even with the anti-nausea medication, and nothing tasted good. At her appointment with the oncologist he reviewed her most recent CT scans, which showed no significant shrinkage in her tumors. Some had even grown slightly. The oncologist strongly recommended that she complete the next 5 treatments, but when he was pressed by Mary and her niece, who had begun coming with Mary to her medical appointments, the oncologist finally acknowledged that the treatment would not cure her; at best it would prolong her life by a few more weeks. Mary told the oncologist she would think about it. She knew she had an appointment with me early in the next week.
Mary came to her appointment in a wheelchair, too weak to walk. We discussed the oncologist’s findings and his recommendation and then I asked her: “What’s the most important thing to you about the next weeks?” She answered right away: “I want to be with my family. I want to have fun with them. I want to talk to my brother and sister about when we were kids, I want to bake cookies. I don’t want to just get weaker and weaker, so that I can’t even go to the bathroom by myself! I want my food to taste good again. Look, I’d do all that chemotherapy and more if I really thought it was going to get rid of the cancer, but not if it’s just going to give me a few more weeks of feeling miserable.” I suggested she go home, talk to her family, think about it, and call me back.
Two days later she called to tell me she’d decided to stop the chemotherapy. She also told me that her family supported her decision. I told her that I also supported her decision, and I would continue to make sure that her medical needs were met.
At her next appointment with the oncologist she told him what she had decided. When she described this to me later, she said she was glad her niece was with her because the oncologist was not happy. He was especially upset when Mary told him she didn’t need any more CT scans, PET scans, labs or appointments at the hospital. When the oncologist argued that he felt she should proceed with all these tests, even if she did want to “take a break” from the chemotherapy, Mary’s niece spoke up and asked “Why? Will the tests tell you how to cure her?” The oncologist sputtered a long and complicated answer that both Mary and her niece were finally able to recognize as “no”. They politely thanked him for his time and her niece wheeled Mary out the hospital door.
They both felt wonderful, even triumphant! Mary tried to twirl her wheelchair in the hospital parking lot and her niece had to catch her when she started to spill out, but both of them were laughing. They knew that in the face of powerful opposition, Mary had just won her right to choose how she would live the last weeks of her life. Mary was free.
A couple weeks later Mary was feeling much stronger. She was able to park the wheelchair in a corner of her bedroom “for a while”, she told me. She went on to have several weeks of the independent life she really wanted, only needing a small amount of medication from me to keep her comfortable. When she began needing more medication and also more help with meals and the other tasks of daily living, Mary and I discussed hospice, and she accepted that service gracefully. Her extended family stepped in to take care of her. Two weeks later she died peacefully in her sister’s home, her little dog on the bed beside her and her family all around to say goodbye.
Mary lived 10 months from the day she heard the oncologist say she had only 4 to 6 months left. During that time she was only bedridden and completely dependent on the care of others for the last 4 days of her life.
Yesterday I went to a lecture at our local hospital in which a young vascular surgeon was introducing primary care providers to a new surgical procedure designed to improve venous circulation. His lecture consisted of specific cases he had worked on since he came to our hospital, as examples of how this new procedure could be applied. It was a useful presentation and as I listened I began thinking about one of my patients with chronic skin ulcers on his lower leg, wondering if this surgery could help him. But then a new case went up on the screen and I forgot my patient’s leg ulcers. The young surgeon was talking about a woman dying from advanced pancreatic cancer. He reminded us that it’s common for people with this type of cancer to develop an uncomfortable accumulation of fluid in the abdomen. In this woman’s case, the surgeon and the patient’s oncologist decided to perform the new procedure to see if opening up the veins around her liver would slow down the fluid accumulation. The surgeon told us the procedure could not stop the changes in her abdomen caused by the advancing cancer, including the increased fluid in her belly, but there “might be a slight chance” that it would delay her death “for a while”. He justified the pain, risks and expense of the surgery by reminding us: “You know what the oncologists say—every day counts.” He sounded smug and very sure of himself.
In a heartbeat I was filled with fury! Who advocated for that dying woman? Did she have a real chance to say “no, thank you”, to the medical specialists? The surgeon’s language answered that question for me. When he said “We decided….” it was obvious that he was not including the patient or the patient’s family as part of the “we”. And why should he? Everyone knows that when the specialists say: “You need this surgery” (or test or treatment), you’re supposed to just say yes. And if you hesitate for a moment, then look into the eyes of your children or your spouse and see all the hopes and fears your illness has piled on them, unspoken hopes and fears because no one has created any space for them, what else can you say? You only have a few moments to give your “informed consent”. The busy specialist stands silently waiting, fidgeting, looking at the notes for his next patient. You are keeping this important man from his work. All you can say is yes, I’ll do it.
Every day counts, I thought, it counts as another day to find some expensive procedure to do to a captive, fearful, dis-empowered patient. It counts as another day of confused suffering, another day for a bewildered family to hope that help is on the way, Mom will be home soon, we’ll take good care of her then, we’ll get a chance to talk and laugh and reconcile old memories after she comes home. But when there’s a complication from the latest test or treatment, Mom has to stay in the hospital a little bit longer. And if one complication leads to another, as it frequently does, and Mom gets sicker and dies never getting to come home, well, it won’t be anyone’s fault; not the surgeon, not the oncologist, not the hospital administrators, because all of the hospital’s specialists on the treatment team agreed that the surgery was worth the risk. After all, “every day counts”.
But in the months and years after the funeral, her husband and children will feel vaguely guilty and wonder, in the long and silent night, what they could have done to make it different.
The irony of bankrupting Medicare by spending billions of dollars on patients in the last few months of life is that the patients themselves don’t really want what Medicare is buying for them. They don’t want one more painful, humiliating and very lonely day in the hospital. What they do want is a chance to understand what’s happening to them. They want to know both the possibilities and the limits of the treatments and procedures they’re offered. They want to talk about it, ask questions, get straight answers (even if the answer is “I don’t know”), think about it and then make choices. They want to hold on to some measure of dignified control over their life and over their own body.
Think about how different the treatment of catastrophic illness would be if every patient had a primary care provider to explain and advocate for them, to make sure they and their families got the information, time and authority needed to make real informed choices. How much better would families recover from the emotional devastation they experience? Unspoken questions keep people awake at night. No matter what the answers are, bringing questions into open conversation helps people pass the night more peacefully. It’s better than Ambien.
So why doesn’t this happen now, for all patients? Well, speaking as a primary care provider who has performed this service for my patients for thirty-seven years, I can tell you that it takes a lot of time, pays virtually nothing and makes you very unpopular with local hospitals and specialists. Also, in the 1990’s America decided that health care should no longer be seen as a service but instead should be re-structured as a business; and just like any business, the focus should be on selling a product. So now, in the same way that Proctor and Gamble sells mouthwash and deodorant, your local hospital sells cardiac surgery, MRI’s and radiation oncology. And, like any other retailer, hospitals have learned how to make their products sell: They know that people who feel confused, alone, frightened and helpless are willing to buy just about anything.
On top of that, primary care providers today have largely lost their independent voice. Dogged by the sky-rocketing costs of medical education and maintaining a private medical office, most primary care providers have either jumped or been pushed into the deep and secure pockets of large hospital corporations. This has fundamentally shifted the relationship between provider and patient. Providers no longer see individual patients as the source of their livelihood. Instead, they have transferred their loyalty to the medical corporations that give them a salary, pay off their huge student loans, and supply them with the equipment and staffing they need to work.
While almost all primary care providers go to work each day determined to give the best medical care to their patients, they must do so with constant reminders that a large and expensive corporate entity needs to be supported by their work. They have neither the time nor the energy for meaningful follow-up appointments with patients they have “turfed off” to specialists, let alone the conflicts with co-workers on the hospital team that might arise from such appointments. So most patients must travel forward alone into the increasingly complex and confusing world of specialty medicine, hoping that somewhere, someone will give them a chance to fully understand what is happening to them and let them choose what they really want to do.
In my personal office I now have a photograph of Seabiscuit, prancing down the track, his jockey on his back and his trainer holding the lead. Mary gave it to me the last time she came to see me, only a couple of weeks before she died. Mary grumbled about the wheelchair her niece used to bring her into my exam room, but I heard them laughing together just before I opened the door. After her niece left us alone, Mary surprised me with the elegantly framed photograph. As I admired it she explained: “I asked my boyfriend in Rhode Island to send me a picture of Seabiscuit, so I could get it fixed up and give it to you. I want you to remember me and use it—you know, for the next person who needs to know that the cancer doctor doesn’t always know the future.”
I’ve used her gift just as she wanted, and I’m sure I’ll use it again. Every patient who sees that race horse and knows his story understands what he is telling them: “Your future is still unknown,” Seabiscuit says, “so have hope! Take charge! Remember, this is your story. It doesn’t belong to the experts, or any doctor, drug company or hospital, or even anyone else in your family, it belongs only to you. Lots of people will give you advice, but only you will run the race. Hold on to your story, and one day you’ll realize that no matter how it ends, it’s the story of a winner.”
Contact E Victoria Grover, PA-C at email@example.com