Just a note to listeners of my podcast. I recently figured out how to make both my audio and written versions easy to find in the same place. All links to books, articles and videos that I reference can now be found directly in the written versions of my podcasts rather than in a separate section as before. Click on the Bolded words in the transcript to follow those links.
In the last two episodes I asked you to think about the complex world of health care from the perspective of doctors and health care systems trying to provide high quality care to their patients. We looked an example of what it took for hospitals to introduce checklists in a way that would reduce errors, and how an error might happen even with a thoughtful, caring doctor seeing the patient over time. I talked about the roles of culture and interpersonal connection in determining whether better outcomes could happen in specific cases. Our main source was the book When We Do Harm by Dannielle Ofri, MD.
In this episode I delve into how things look from the patient perspective. One resource I used is an organization called The Patient Story, from both their website and YouTube channels. They feature videos of people who are still living after cancer treatment. Each person tells their story of how they got diagnosed and how things went as they got treatment. The Story is also a resource with support for anyone newly diagnosed, as well as throughout treatment, for a variety of cancers. To quote from their YouTube channel, "The Patient Story is led by a dedicated team of medical, editorial, and video experts, committed to authentically portraying the cancer patient experience."
I turned to this resource because cancer can be both hard to diagnose initially, and often involves challenging and complex routes through a care regimen. I thought their stories might help illuminate the complex world of medical care from the patient's point of view.
The three people whose videos I am using are:
Chris Parrish who is 56 years old and, at the time of writing this episode, is a 16-year survivor of pancreatic cancer. She has gone on to not only survive it but to found her own cancer support website.
Lindy Avalos who at age 34 was diagnosed with colon cancer 2 1/2 months after giving birth to her first baby. She is happily focused, now, on raising her son.
And Jess Thompson who, at only 26 years old, was diagnosed with bowel cancer and is still living two years later as of this date.
The first patient, Chris Parrish had lost a lot of weight five years before being diagnosed. People asked her if she was okay, and she went in to see a doctor who thought it was due to her busy job running a day care center. She also had digestive issues and was using over the counter drugs like Tums. She went to the doctor at one point because her digestive issues didn't go away and was given Prilosec and Nexium. They didn't do any scans or an MRI. She stopped going to see the doctors because they were just giving her the pills and even they didn't seem to be doing much good. She eventually stopped taking the pills prescribed by the doctors and went back to using Tums.
After five years, in 2008, when she was working at a call center, she had difficulty eating and having bowel movements. Now the doctor thinks it is more serious. She lives in a small town and decides to go to a cancer center in Boston for a second opinion where they diagnose the cancer. She starts a long treatment, including a trial of a then new method of chemotherapy, and after completing that, and several years on maintenance chemo she went on a chemo holiday with the advice of doctors in 2012. She has been healthy ever since.
Chris's advice from her own experiences are to interview lots of doctors, to get all the information you need, including second opinions. She also says the support she had from family and friends helped her stay strong. And she relied on faith. This included, for her, reading The Power of Now and books by Thich Nhat Han.
The second patient, Lindy Avalos, went through her first pregnancy not knowing quite what to expect. She experienced severe abdominal pain, changes in her bowel movements, and blood in her stool, but thought this was maybe just how her body was responding to the pregnancy. Her doctors didn't react to this as being anything to worry about either. Plus, she doesn't have any other family members who've had colon cancer, which might have triggered a concern if it had been the case.
But several years before this she had been diagnosed with a meningioma, which is a benign tumor in the lining of the brain, and it was accompanied by a benign tumor on her spine. They were both removed successfully, and because of the two tumors in different parts of her body, she was regularly scheduled for a full body MRI to make sure that there are no new such benign tumors.
The next regular MRI was scheduled for two and a half months after she gave birth to her son. The results came back showing something and the doctor said, "There is no recurrence of the meningioma, but you should go get checked because we're pretty sure this is malignant cancer."
As Lindy says, "It was kind of by chance that we found it, and by the time we discovered what was going on I was a stage four and it was in the colon obviously, and it had metastasized into the lymph nodes, the liver, and the lungs."
Treatment was started within a month or so. The development of this cancer was a surprise to both Lindy and her doctors, who treated her for the gastrointestinal issues she had during and after the pregnancy. But it was the regularly scheduled MRI that revealed the cancer itself.
Lindy speaks of an amazing group of friends and family who came and offered physical support right away like doing her cooking and cleaning. She also got connected with people who'd been through the same disease who offered emotional support.
The third person whose story I listened to, Jess Thompson, was experiencing debilitating stomach cramps, vomiting, and fatigue, among other things. The symptoms would appear every month, out of nowhere, as she says. They would last for about 48 hours and then go away quickly. She wondered if she might be gluten intolerant or something. She lived alone without immediate support of family members or friends. She went to the hospital and was given pills for what they said was a gastro bug.
The pills didn't help and at one point she was unable to finish climbing a hill that she knew she was otherwise quite healthy enough to do. She at first ascribed this to being unfit because she hadn't been exercising as much recently. The combination of this, with the ongoing gastrointestinal symptoms, led her to start finally pushing for blood tests from the doctors.
She was scheduled for the blood tests when she had a particularly bad episode of the stomach cramps. She lived alone and was worried that she might pass out, so she called for an ambulance which took her to the hospital where they discovered that she was severely anemic. She needed three blood transfusions and infusions of iron to get through it.
This started a process of testing. She had an MRI and CT scan done and they scheduled her for a colonoscopy. She was awake during the procedure and could see the screen showing the inside of her colon. The energy in the room seemed to change, she says, and she started crying. A nurse tried to comfort her, but even though they told her they would describe what was going on during the procedure, it doesn't sound like that was happening.
After the colonoscopy, as she was waiting for the results, Jess had a difficult experience. As she says, "I was by myself, like they didn't let me have a support person in the waiting room with me for this so, I was in the waiting room. No one would look at me, all the nurses and doctors walking past wouldn't look me in the eyes because I think they knew, they knew information. They weren't allowed to share that with me at that time because they thought it was up to my doctor to complete the report and tell me the information." The doctor told her she had stage 4 cancer of the colon.
The tumor was large enough to obstruct her bowel movements, and that was what caused her symptoms. Her cancer had spread to fat tissue in her stomach and some lymph nodes. She then had, as she says, "a roller coaster ride" of emotions as the surgeon told her the chemo she needed wouldn't be too bad, like no loss of hair, then the oncology nurse said she had a genetic mutation that might mean the chemo wouldn't work in her body. She had 6 months of Chemo. After the chemo they needed to do a PET scan to see where else the cancer had spread in her body. As happened before, no one would answer her many questions before the results came. Happily, the PET scan said there was no more cancer.
Jess is a very self-reliant person, and by the time she had the surgery to remove the section of her bowel that had the tumor she did have friends coming in to support her. Jess describes herself as having both a new life and a new appreciation for herself as a person before the time when cancer came into her life.
I would encourage you to watch all three of their video stories if you want to get the feel of what it was like to be in their shoes. Follow the links in the written transcript earlier where their names are in Bold type.
I see several commonalities among these three stories that I think are helpful in understanding why the patient perspective is important.
One is how long it took for their cancer to be discovered. The doctors at first diagnosed things other than cancer. From the patient's perspective the diagnoses focused on relatively non-threatening medical problems. Each one of the three people reports having to go back with progressively worse symptoms before the cancers were found.
A second theme from Chris and Jess' stories is how their diagnosis and the type of treatment they received changed over time. In Jess' case this had to do with a genetic variation that potentially affected the ability of the chemotherapy to be successful, followed by there unexpectedly being no recurrence of cancer after the chemo sessions were done. In Chris' case she was put on a new chemo regimen that ultimately didn't help, followed by a different chemotherapy that did.
A third commonality is the resilience that each of them showed. As Jess says, "I would say that you're capable of more than what you realize. I think, even though things can be super scary and feel impossible to get through, a year from now can look so different." At some point all three became more insistent on having the doctors look more deeply into what was going on with their bodies. In a sense, they became their own advocates.
Even in Lindy's case where an MRI that was scheduled due to something other than her cancer symptoms was what found the cancer, she kept going back to the doctors talking about the symptoms that worried her. And Chris specifically speaks of her reliance on her spiritual quest and practices as being helpful.
Finally, at some point all three received emotional or physical help from family and friends.
Patients are mostly not doctors. When we get symptoms, we try to figure out how to react. Is this some minor thing in passing? What symptoms matter to me? Should I take the time and effort to get a doctor's appointment? What will the doctor need to know? How much time do I have in the doctor's office to describe what is happening and to react to how the doctor responds to me? In our own way, we are doing a kind of differential diagnosis. This includes the decision of whether to even get a doctor's appointment, or to go to the emergency room or urgent care in the first place.
In each of these stories the patients made decisions about when to accept the earlier reactions and diagnoses from the doctors, when to push back or demand more tests, and when to get a second opinion.
Getting the right diagnosis is one aspect of this challenge. Another aspect is what happens when you get the wrong diagnosis and are started on treatment for the wrong problem? An article in The Free Press by Sean Fischer tells the story of his mother being misdiagnosed in June 2022 as suffering from Alzheimer’s an incurable form of dementia.
As Sean says in the article, " The story begins in the early spring of 2001, when my dad received a panicked call. Mom was on the side of the highway, vomiting; she’d been driving home when she suddenly experienced a wave of nausea and a debilitating headache. Her doctor said it was a migraine, but a few months later, Mom lost hearing in one ear. She was diagnosed with Ménière’s disease, a disorder of the inner ear."
His mom was an incredibly resilient person. She found ways to adapt to her different medical conditions and still lived the life of a devoted mother and community member. Then in 2010 her husband found her " crawling towards him, crippled by nausea, pain radiating across the back of her skull." An MRI found that her brain had been forced to drop through the opening at the base of the skull. They thought it might be caused by a leak in spinal fluid sparked by epidurals done when giving birth to her sons. They looked for the leak but could not find it. So essentially nothing could be done.
There followed years of her being treated for different symptoms of headaches, hearing problems and anxiety. No one treated these symptoms like there might be an underlying cause. Then his mom began showing signs of dementia like memory loss, repeating herself and having difficulty following recipes when cooking dinner, for example.
In 2022, as Sean relates it, " It was worry about her memory that pushed my parents, in April of 2022, to turn to NYU Langone Health’s Center for Cognitive Neurology, seeking treatment from the most elite doctors they could find. My mom was tested extensively—and two months later came the diagnosis, with the finality of a punctuation mark. Alzheimer’s."
This was devastating to Sean's parents. They began planning for life consumed by her falling deeper into dementia, including selling their home to purchase something smaller they could afford, and taking other steps to hold off the bankruptcy her condition might force them into. They were told about a clinical trial for a drug that might hold off the dementia, but it turned out she could not qualify for it because of the leak in spinal fluid that had been diagnosed, but not found, years earlier.
Her parents were devastated by this news, but it turned out to be a gift in way. In an attempt to qualify for the drug trial, she went to the hospital to find the leak and have it repaired. The treatment was successful, but before starting the drug trial her dementia symptoms started going away within two weeks.
As Sean says, " After six weeks, her problems with memory were completely gone.
And eventually, Mom’s neurologist confirmed: She did not have Alzheimer’s." "The surgeons who fixed the leak were shocked. They had never seen a recovery like it."
Later they discovered that a year earlier the Cedars Sinai had published an article in which her condition, of a spinal leak causing dementia-like symptoms, had been found and that treatment of the leak caused the symptoms to go away in many people. To Sean this seemed like an example of how the system can have research and studies going on that may not be widely known to other doctors.
His Mom's case was, like Lindy's experience that I talked about before, a piece of luck. In Lindy's case a test for an unrelated problem found the cancer. In Sean's mother's case, doing a procedure to make it possible for her to qualify for a treatment for Alzheimer's ended up curing the dementia symptoms they incorrectly diagnosed as Alzheimer's.
In Episode 12 of Butterfly Arose I quoted Dr Ofri on the challenges doctors face with differential diagnoses. As she says on page 33 of When We Do Harm, "For each of the presenting symptoms, there is a gamut of possible causes, what doctors call a "differential diagnosis", that range from the prosaically benign to the concerningly urgent, to the immediately life-threatening. The name of the game is to come up with a broad differential for each symptom. Then prioritize them by likelihood and severity. Testing for every diagnosis is not feasible. So the doctor needs to ask the right questions. Listen carefully to the answers. Do the right kind of physical exam and pay attention to the clinical cues."
In other words, both the doctor and the patient are trying to figure out what is going on with the patients' body, each from their own perspective. And I think the relationship between the patient and doctor is important, because it can affect how well they do in sharing information.
What information from the patient actually helps the doctor in reaching a diagnosis? What does the doctor say about the patient's diagnosis? Do they talk about it in language the patient can understand? Does the patient have information about their body that would be helpful but they don't know that it matters? To what extent does the patient trust the doctor and how might that affect what they will share? In the midst of all this there is the restriction on the time the medical system allows for the doctor to spend with each person.
I think this all highlights how complex our human medical system is. At the level of patient and doctor there is room for both valuable connection and missed opportunities. I think there are complexities at the level of the local health care system, and in the connection between primary care and hospitals. And the larger system, of which the local and regional systems are a part, I think, introduce a further level of complexity. In some ways it seems like a miracle that the system works as well as it does. And I think all of us want to see further improvement in this system going forward.
There is something else that I think has been an essential development in health care at every level. It began in the late 20th century and is a growing movement now in the 21st. That is what we call Person and Family Centered Care. I have some experience with this myself, and I invite you to join me in the next episode of Butterfly Arose as I explore what it is, and where it might fit into the complex world of medicine.
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