It is a way I hold myself accountable and invite my readers and listeners to think about what underlying theories or beliefs they carry with them as they go through life. And how those beliefs might affect the way they think and learn.

Using the example of baking bread I show how complicated it can really get, and apply that seemingly simple example to changes being made in healthcare. 

In this episode I'll talk about the third group, the Person and Family Centered Care staff. These are the employees who find patients and their family members who are willing to become volunteers. It also includes those who interact with patients and family members to correct mistakes, internal or external organizational change consultants, and those who act as intermediaries between medical and administrative staff and patient partners.

For this episode I draw from five books written by four people. They are:

Finding Joy in Medicine by Reza Manesh, MD, in which he relates both the story of how he became a doctor and teacher of other doctors, as well as the ways in which the experience of becoming a doctor helped both his medical skills and sense of humility to blossom. Doctor Manesh's parents immigrated from Iran when he was two years old. After starting school to study neuroscience, he changed to getting a degree in medicine and becoming a doctor in internal medicine.

What Patients Say, What Doctors Hear, and When We Do Harm, by Danielle Ofri, MD, who takes us through the challenges of responding to the different way her patients have communicated their needs and the complex levels at which mistakes can happen in medicine. Doctor Ofri is an attending physician who works in primary care and also teaches other doctors. In addition to writing books and articles and doing TED talks, she "is a founder and Editor-in-Chief of Bellevue Literary Review, the first literary journal to arise from a medical setting, now an award-winning, independent nonprofit literary arts organization." as her website says.

The Shift by Theresa Brown, RN, where she tells a story, as the subtitle says, of One Nurse, Twelve Hours, Four Patient's Lives, and through this gives us a gut level sense of what it is like to walk in her shoes. Theresa grew up in Springfield, Missouri and originally earned a bachelor’s and then doctorate in English, which she taught in college for several years. She then went through an accelerated course in nursing and became a registered nurse and works on a cancer ward of a major hospital.

And Complications, A Surgeon's Notes on an Imperfect Science, by Atul Gawande MD who also has a master’s degree in public health. This book, through telling stories of challenges he has faced, leads to philosophical questions that underlie the practice of medicine. Doctor Gawande was born in Brooklyn to parents who immigrated from India. According to an article on Wikipedia, his education and degrees took him from a BA in biology and political science, to a masters in philosophy, politics and economics, to a doctor of medicine and finally completing a residency as a surgeon.

I chose these four because they represent medical professionals who come from a variety of backgrounds and who do different types of work in medicine. They do not, of course, represent all medical professionals, but I found their books helpful in beginning to see medical system complexity through their eyes.

One theme I found is the contrasting roles of book learning and practical experience.

Doctor Manesh, for example, in relating his experiences in medical school talks about how the emphasis was more on memorizing large amounts of data quickly rather than the “problem-solving and critical thinking" he had experienced in a class on neuroscience before entering medical school.

Like many other medical students, he says, he struggled with depression and even, in his case, thoughts of suicide. The cause was the long hours of memorization and frequent tests of their memories, with little time to sleep. It was in his third year of medical school when he was finally able to interact with patients again, that he gained practical skills and learned about the importance of human connection from their actual disease experiences. Knowing the facts of what science knows about our human bodies is vital for doctors and nurses to give us excellent care. But so are things like empathy and building trust with a patient.

Or take another example, which I spoke about in episode 12 of Butterfly Arose. I recounted how Doctor Ofri, in her book When We Do Harm, goes into detail about the challenge of figuring out what is causing a patient's problems when their symptoms might be caused by a variety of problems. In that case, it turned out that the patient had an incurable form of multiple myeloma. Doctor Ofri had missed the diagnosis in part because of the fuzzy way in which the patient presented her medical problems, and in part because Doctor Ofri missed seeing two blood test results that might have clued her in to the problem. The tests had been done in other departments or hospitals or far enough in the past and were thus not easily viewable to her. She could not come up with the right diagnosis without having the full information about the patient's history.

But even a simple seeming medical problem can hide complications. What if a patient comes into the emergency room with a bone in their leg sticking through the skin? On the surface it seems simple to know what the problem is, and if the patient was hit by a car of fell off a ladder at 20 feet, it might be simple, indeed. But what if they stumbled down a few stairs? Many people could survive that without any broken bones. Was this a fluke? Or could it be caused by osteoporosis?

An article I found from the Mayo Clinic says osteoporosis can be caused by age, low levels of testosterone in men or estrogen in women, thyroid gland problems, low calcium intake, eating disorders, and excessive alcohol intake among other factors. In this case, after treating the break itself an emergency room doctor should at least refer the patient to a primary care clinic for follow up.

If the patient is elderly, it might seem easy to understand the cause of the broken bone. But what if they are in their 40's or 50's? When the primary care doctor learns about this incident, they will need to combine their book knowledge of the possible causes with what they know about the patients' history. What among eating disorders, alcohol use, hormone imbalance or the condition of the patient's thyroid apply to this patient? Does the patient even have a primary care physician with knowledge of their history, and to what extent does the patient trust the doctor? Trust, after all, can be important in whether a doctor knows if a patient is suffering from alcohol abuse to use just one example.

On pages 23-24 of his book, Doctor Manesh says something I found important in confronting this dilemma. It was something he read by renowned Canadian physician Dr. William Oster.

"To study the phenomenon of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all."

Doctors and nurses must navigate this intersection every day. And as doctor Gawande says, in his book Complications, on page 7, "We look for medicine to be an orderly field of knowledge and procedure. But it is not. It is an imperfect science, an enterprise of constantly changing knowledge, uncertain information, fallible individuals, and at the same time lives on the line. There is science in what we do, yes, but also habit, intuition, and sometimes plain old guessing. The gap between what we know and what we aim for persists. And this gap complicates everything we do."

Another theme I found in these books is the complications of busy workdays with many patients and little time allowed for each person.

In chapter 3 of The Shift, titled Hitting the Floor, nurse Theresa Brown gives an excellent example.

As nurse Brown starts her day she is asked by another nurse, Susie, to validate the numbers on a bag of platelets with the patient's identification information. This is to make sure the platelets are given to the right patient in the right amount.

The patient needs this bag of liquid because their chemotherapy treatment has reduced the level of platelets in their blood stream. They are scheduled for surgery, and without the surgeon inserting an intravenous line to get the platelets into their blood before surgery, they could bleed to death on the operating table.

There is a vital series of steps here. Record the number on the bag of platelet liquid in the computer and make sure they are going to the right patient.

Have a second nurse make sure you have entered the correct information.

Notify the surgeon so they can insert an intravenous line into the patient's body, so the platelets get in their blood with enough time to be successful before their scheduled surgery. And the doctor is waiting to hear from Susie so he can insert the intravenous line.

But as Susie and Theresa head toward the computer to enter and validate the numbers, Susie is asked by the wife of another patient to disconnect his intravenous lines so he can take a shower. Theresa offers to do that job so Susie can enter the number on the computer; getting the platelets to the right patient is more urgent than someone needing a shower but having to wait to get a shower can feel very inconvenient to the other patient and their wife. Theresa removes the line, for Susie’s patient, and later verifies that Susie entered the numbers accurately in the computer. All this before she gets a chance to work with her own patients.

This kind of interruption can and does can happen at any time in any day, especially in hospitals.

Another common theme in these books is the complications of understanding what your patient needs as you navigate communication challenges.

Doctor Ofri opens her book What Patients Say, What Doctors Hear by telling the story of a patient who annoyed her with his demands for care. At times he just shows up at her clinic, including when she is not there. He leaves because he only wants to see her, then annoys her by leaving repeated voice mail messages and by calling to get an immediate appointment. In that phone conversation, when he says why he wants to see her, it doesn't sound urgent to her. She offers him the choice of either to go to urgent care or make an appointment, but he asks again to see her immediately. Over a week, they exchange phone messages, with her repeating the scheduling choices and him just saying, "I need to see you," in different ways. He then shows up at the clinic without making an appointment, which annoys her, but she reluctantly agrees to see him. This in spite of having a full load of patients who do have appointments. She asks her assistant to take him to an exam room to check his vitals, and he collapses before he can take a step. He ends up in the emergency room.

In retrospect, Dr. Ofri describes her patient this way. "For all his annoying mannerisms and pushiness, Mr. Amadou was fundamentally trying to say, 'Help me.' Deep down, no doubt, he was terrified that his heart could give out at any moment. This fear informed all of his actions. Seen in this light, his relentlessness was understandable--his life hung in the balance--so he could never take no for an answer."

She'd reacted to his annoying demands for her time by drawing a boundary. There were alternative appointments he could make. In her self-defense in the face of the way he expressed his fear of heart failure, she didn't take a moment to really get the message underneath the surface presentation. His falling to the floor was, in her words, "that stomach churning moment" when it becomes clear that what seemed an ordinary problem was in reality an emergency.

As she writes about this incident, she uses it to highlight what she sees as a critical truth about medicine. As she says, on page 5, "For all the sophisticated diagnostic tools of modern medicine, the conversation between doctor and patient remains the primary diagnostic tool. Even in the fields that are visually based, such as dermatology, or procedurally based, such as surgery, the patient's verbal description of the problem and the doctor’s questions about it are crucial to an accurate diagnosis."

Like all primary care doctors, she has a packed schedule every day and only has so much time to see and talk with each patient. Someone who frequently insists on getting immediately scheduled for an appointment can make it harder to give a doctors' full attention to other patients.

Speaking of communications challenges, in Chapter 13 of his book Finding Joy in Medicine, Doctor Manesh recalls how he missed a diagnosis in his mother's case. She was complaining about her left eyebrow feeling numb and tingly when she is stressed. Because of the circumstances, and because she is his mother and he knows her that way, he tells her it is okay, and she should relax, maybe take up meditation. She sees other doctors who say the same thing, likely just going along with Doctor Manesh’s diagnosis when she tells them what he said. This doesn't seem urgent to any of them.

But five years later she meets a neurosurgeon at a dinner party. She tells him about the problem, and he does a quick diagnosis. As doctor Manesh says, on page 58, "He took his napkin, folded the edge and touched her eye. She didn't blink as she should have." He asks her to come into his office, does an MRI, and discovers a thankfully benign tumor. Removal of the tumor solves the problem.

It is a challenge to really understand your patients’ needs when you don't know them well but knowing them well can create a certain blindness of its own.

I was tempted to use another example from these books, but as I read over the three examples, I've already given I noticed something I think is important. As I read these books I tried to focus on one aspect of the life of a doctor or nurse in each story. But in each story they told, other factors played a role as well. One of those factors is the cultural ethos in which medicine exists.

I took this up in episode 12. Because of the success of checklists in preventing accidents in the airline industry, in 2001, one doctor developed a checklist to prevent infections caused by errors when a central line was inserted into a patient in the intensive care unit, or ICU.

His list of steps was exhaustive and resulted in such infections essentially dropping to zero in his hospital. "And," as Doctor Ofri says on page 10 of her book When We Do Harm, "when the checklist was tried with nearly one hundred ICUs in seventy different hospitals in Michigan, infection rates also plummeted to near zero within three months."

But when the authorities in Ontario, Canada told their hospitals to adopt checklists, there was no improvement in infection rates. This was because successfully implementing this protocol required a change in the hospital's culture. Doctors were not used to being corrected by nurses until there was a conversation about why everyone's eyes needed to be focused on making sure the checklist was followed accurately, including nurses. And that meant the hospital administration needed to react if a doctor got angry at a nurse for pointing out a missed step. Without those changes to the culture, the checklist was a failure.

We need to be able to trust our doctors and nurses, both for their medical knowledge and to trust that they will treat us in a way we feel respected as human beings. And each of these four professionals exhibited qualities in their books that I admire.

Like Doctor Manesh, in his 15th chapter, embracing the mantra "I don't know," which motivates him to often engage his whole team in making sure they are working with the right diagnosis for a specific patient.

Or Doctor Ofri who uses examples of her own mistakes to help us understand how she learns and the challenges of navigating medical complexity.

Or nurse Theresa Brown in the way she takes us through a 12-hour shift weaving in the times she is not sure of what to do in a specific circumstance, how she asks for help, and her commitment to helping other nurses and doctors even when her day is very busy.

Or Doctor Gawande who uses real world dilemmas to illustrate thorny philosophical issues. For example, every surgeon must go through a learning curve. It is not possible for a human being to learn a new skill without trial and error. Our own experience of making mistakes is what we learn from, and they are learning on human bodies that are not anything close to exact copies of each other.

Now, legally and morally every patient has the right to have a say in who does things to their body. But in the operating room, for complex procedures, there is always a team and that includes both experienced surgeons and those in training. As he says, on page 24,

"This is the uncomfortable truth about teaching. By traditional ethics and public insurance (not to mention court rulings), a patient's right to the best care possible must trump the objective of training novices. We want perfection without practice. Yet everyone is harmed if no one is trained for the future. So learning is hidden, behind drapes and anesthesia and the elisions of language."

If an experienced doctor is being operated on, and needs a central line inserted, it won't be done by a first-time doctor in training because that type of patient and their family know about how this training happens. But Doctor Gawande goes on to say, "the ward services and clinics where the residents (meaning doctors still in the learning phase) have the most responsibility are populated by the poor, the uninsured, the drunk, and the demented." Doctor Gawande says that it is on these populations where residents often get to practice on their own, after the initial times when they are directly supervised by the attending, or experienced surgeons. To me this is an example of an intersection between the practical problem of training doctors and cultural questions where some people may be more likely to experience medical mistakes.

I will do an episode for my Sacred Gyre podcast on my own experiences in learning, using examples from both my youth and as an adult. This will be partly to illustrate an example from my own life, and partly to be honest about why I approach this topic the way I do.

For now, let me say that these four authors helped me deepen my appreciation for the complex world of medicine that we all traverse in one way or another in our lives. In the next episode of Butterfly Arose I will go into more detail about how patients, doctors and medical systems are attempting to improve the medical world they inhabit. In particular, I want to talk about what is this thing called Person and Family Centered Care that I introduced in episode 14?

Thank you for listening. Remember that you can find links to books and articles I reference by clicking on Bolded text in the written version of my podcast episodes. And please send me your thoughts on what you enjoy about my work, or ways I could make it more interesting or useful from your point of view.

In this episode I will begin from the book The Patient Experience, by Brian Boyle. One month after graduating from high school in 2004, Brian's car was hit by a dump truck. The accident that put him into the intensive care unit of a hospital. As the website for his book says, "While in a two-month long medically induced coma, Brian Boyle was unable to move or talk to anyone around him, yet he was able to hear, see, and feel pain. Brian slowly clawed his way back to the living and to tell his story." Brian also has a website at brianboyle.wordpress.com. You can find links to this and all resources I mention by clicking on the bolded words in the written version of my most recent podcast episodes.

Brian had, in a sense, to start from scratch beginning with his first day in the Intensive Care Unit on July 6th, 2004. Even things like smiling, blinking or wiggling his toes took more strength than he could muster in the first weeks of his recovery process. Through determination, he got healthy enough to leave the ICU, to undergo a rehabilitation process, and eventually to complete the Ironman World Championship in Kona, Hawaii on October 13, 2007.

I am not going to go deeply into Brian's amazing story, he does it best in his two books, Iron Heart, about the car accident and his recovery in detail, and The Patient Experience, which I read to help with this episode of Butterfly Arose. In The Patient Experience, Brian relates much about his experiences in a way that illuminates the value of suggestions he makes for medical care teams, and for family or other care givers to be successful in their roles in such a challenging situation.

The experience of being in a medically induced coma and not able to speak for himself for an extended period of time adds a new dimension to what I heard from the stories of those 3 cancer survivors in Episode 13. Even after he was brought out of the coma, he had to relearn how to speak, and even hand gestures like waving hello took time and effort to be able to do.

During this time, he says he could often hear and even feel what was being said or done by others. Since he could not communicate, how did the health care professionals know what to do to give him the best care?

From one perspective they had extensive training in making physical measurements to determine how he was doing. These measurements helped them make decisions about the next steps to take. This is how Brian ended up with all the tubes, wires and machines connected to his body, and to the fluids and medicines they gave him. Ongoing checks of these measurements gave them information about how to react to emergencies, like when they detected inflammation in his body.

But Brian points out that some of the information they needed came from his parents. I got this in particular from part 2 of his book, where Brian gives his thoughts on Patient and Family Centered Care, or PFCC. In the chapter on PFCC Brian relates a time when his parents had a feeling that something was wrong with his breathing. They spoke with the respiratory therapist who assured them that things were doing okay. His parents went down to the waiting room and were later hurriedly called back upstairs.

It turned out that a night shift nurse, when walking by Brian's room, noticed that his face was turning blue. She called a code and Brian's life was saved. Brian gives this as an example of a missed opportunity by the respiratory therapist to take his parent's concerns seriously. It comes from the family's intimate connection with the patient, as Brian says on page 63, "Their level of awareness originates from their love, which is unbounded by the normal limits of science and medicine."

I see this as a reflection of a more holistic view of human relationships in the world of medicine that Brian talks about. Science does excellent work in using specific observations which are defined by research as being what will tell the doctor when something needs to be done, and gives them clues as to what, exactly, they should do. A potential problem is that, if medical professionals ignore what patients and those who know and love them say, they may be limiting the type of information they need to use in making high quality medical care decisions.

Human connection can tune us in to things that cannot necessarily be measured by machines or other physical devices. Family members that are close to the patient can have an advantage over doctors in this respect. And among health care professionals, those whose jobs keep them in closer contact with the patient may also have an advantage over those with less contact.

Brian overcame this extreme situation, he says, due to his own resilience, the support of his family and friends, and the skilled work of the medical teams who delivered care to him.

This highlights, I think, the importance of the relationship between doctor or nurse, especially, and the patient. Another example of this comes from Jess Thompson, a survivor of colon cancer whom we met in the last episode. She was left alone waiting for results of the colonoscopy while people walked, avoiding eye contact because, Jess believes, they weren't the ones allowed to report those results. What if someone had just stopped to ask how she was doing and acknowledge her feelings? What a positive difference that might have made in her care experience.

In Chapter 13 of Brian Boyle's book, The Golden Rule, on pages 160-63, he talks about a physical therapist who had just started working with him. When Brian expressed an interest in getting back into the swimming pool, the therapist told him to give up the idea of swimming because of the trauma his body had experienced. Brian struggled with negative thoughts after that interaction but in the end made the decision to focus on the possibility that he might be able to swim again anyway. Brian's decision helped him to work on each physical therapy workout in a positive way, eventually helping him recover his swimming abilities.

Whatever the odds were of Brian being able to swim, they weren't absolute, and for the physical therapist to speak as though they were, was a mistake. Brian suggests giving the patient realistic descriptions of their medical situation and the challenges they face, but to encourage them to focus on what they can do so they engage with their physical therapy each day.

As I said before, in his book, Brian introduces the idea of Patient- and Family-Centered Care; in fact, that is the title of his Chapter 4 beginning on page 61. This is where he reports the incident I mentioned when his parents had a feeling that things were not right with his breathing but weren't taken seriously by the respiratory therapist.

In addition to providing excellent ideas on improving health care delivery as a patient advocate, Brian works with the Institute for Patient and Family-Centered Care or IPFCC. On their website, the IPFCC defines this as "Patient- and family-centered care is working "with" patients and families, rather than just doing "to" or "for" them."

In a video on their website they talk about the importance, for example, of doctors talking with the patients in the hospital room, not just talking to each other about the patient. The core principles they list in the video are given as "dignity and respect, sharing information, participation and collaboration."

From the IPFCC I purchased a book titled Privileged Presence, Personal Stories of Connections in Health Care. It has over 65 stories, including many that focus on the patient's experience and perspective. I chose three stories from the book to enrich my understanding from the patient point of view.

The first story begins on page 15 in the section As Unique As Snowflakes, Responding to Individuals. The story is titled I Am Not a Patella. A sixteen-year-old youth sustains an injury in dance class, causing her patella, or kneecap, to move over to the side of her leg. It is very painful and requires an operation to put it back in the right place. While in the hospital a doctor treated her in an unkind way. In her words;

"The next morning, a doctor I'd never met before came into my room with a bunch of other people and said to his group, 'So, this is the patella.' I tried to respond with, 'Yeah, I'm Suzy.' but he didn't respond to me. Did he think I wasn't there? He never told me who he was and never spoke to me by name. He just spelled out medical jargon to the doctors with him. I felt like a science experiment."

She had a similar experience with the first physical therapist she encountered, but a second one was warm, encouraging, and treated her like a person, not a medical problem.

The second story, in the section When Life is Threatened: The Importance of Support, is titled Death--Life. Beginning on page 41, it is about Stella, who was treated for cancer, with both surgery and radiation. She says she had an excellent experience at the Cancer Care Clinic. The following quote, from pages 43-44 says;

"The radiation oncologist sat with me and my daughter and answered every question I had. He spoke directly to me and also included her. He never looked at his watch. He covered everything--practical suggestions regarding what kind of underwear I would need and prescriptions for medications I might need. He even covered really embarrassing things. It was as though he and the staff had thought of everything for you because they didn't want you to have any unnecessary stress."

For her, this thoughtful approach was important in her recovery.

From the same section comes the third story I'll talk about. Titled Flying Blind in a Frightening World, it is the story of a man with Lou Gehrig’s' Disease, also known as ALS, which means amyotrophic lateral sclerosis. ALS moves through the body, one's muscles wasting away, until everything, including breathing, becomes impossible and they die. The ALS association says many people die in 2-5 years, but others may last much longer. Her husband dies after 6 years.

She has repeated experiences of the main ALS specialist they saw doing things like say "You're about where I expected you to be." without a lot of explanation, never looking her in the eyes or acknowledging the challenges she was facing as her husband's caregiver. At one point, at the end of a meeting with her and her husband, she says; "His parting words were, 'I can see this is a lot to take in. I'll call you in a couple of days.' He never called. From that point on, we were flying blind in a frightening world." she concludes.

To her the doctor seemed to be coming from a generalized medical point of view. He told them the husband would probably last 2 years, when he actually lived for 6 years before dying. And despite all the difficulties, her husband continued working as well. As she says, on page 47; "All the doctor needed to say was something like 'Gosh, you're hanging in there so well--good for you.' Instead, all he said was, 'You're about where I expected you to be.' And, as always, he never talked to me."

She and her husband began searching for anything that could help them be better informed or provide support. On the internet they found an ALS support group. In interactions with other patients and their families, they got many helpful tips for coping with the disease.

The medical professionals she had the best experience with were those in the emergency room, which they had to visit a couple of times, and their primary care doctor, plus a couple of nurses. These folks were all compassionate and thoughtful, in contrast to the experience with the ALS specialist.

She goes into detail about her challenges as her husbands' caregiver, being a mother of a four and a six-year-old at the time of her husband's diagnosis. She also held down a job of her own. She felt a lot of anger at the treatment by the specialist. And she found a way to give voice to her feelings and experiences.

She relates this on pages 52-53; "Two years after my husband's death, I made an appointment to see the specialist who followed his case. I was in his office and just unloaded." She told him all the things he'd done wrong from her point of view.

She says she later learned that he changed his approach, to the satisfaction of newer patients who worked with him. I found this to be an example of how doctors need to hear how things are going as they provide care. And I think it would have been very helpful if there had been some way to give him this feedback closer to the beginning of her relationship with him.

Her being able to find support online in the late 1990's is an example of a development that has become more common recently. In 2005 an organization called Patients Like Me or PLM was founded by two brothers of a patient with ALS. It provides a place for patients to share their stories, to find support in keeping track of the progression of their condition or disease, including peer support from people living with the same condition they are, and other resources.

Today, according to their website, PLM members and their supporters are living with 2,800 different medical conditions. What a gift. A way to turn your own difficult experiences in health care into a method to help others. If you google a condition you are living with, in addition to PLM you may find other groups that offer support for specific medical problems, like The Patient Story, the website where I found the cancer patient stories I used for the last episode of Butterfly Arose. These organizations and websites are resources that help patients who are trying to find their voice, and to become more resilient in living with challenging medical problems.

A somewhat different organization, of which I am a member, is called the PFANetwork. As they say on their website; " The PFAnetwork is a nationwide community of patients, family caregivers, and community leaders reinventing healthcare through authentic partnerships. Our diverse lived experiences are critical to shaping healthcare policies, programs, and services that truly meet the needs of patients and their families. Authentic partnerships are the cornerstone of our mission."

It is a part of a larger organization, PFCC partners, founded by Libby Hoy. Libby has personal experience as a care giver for family members, and as a patient with her own health care challenges. PFCC Partners, as the name implies, develops partnerships on a practical level with primary care groups, hospital systems, state and federal government organizations, community-based health organizations and many others to bring the patient voice into their work.

Both of these organizations are focused on improving the quality-of-care patients receive. The PFANetwork offers training for patients and family members in things like how to tell a story about your experiences in a way that helps the other person get a sense of what it was like to walk in your shoes. It has seminars on other skills like how to be effective in the role of what today is called being a "Patient Partner."

In other words, a more specific kind of skill building. By combining patient advocate skill building and collaboration with health care organizations, these two organizations are one model of how to be effective in such a complex world as medicine.

When I put together what I learned from Brian's book, the stories of the four patients I talked about in Episode 13, and the three patient stories from the Privileged Presence book, I draw the following conclusions from the patient perspective:

First, patients bring a deeper knowledge of their own. They live in their bodies 24 hours a day, seven days a week. A good bit of that information is opaque to the medical team, and it needs to be part of the information doctors use in offering a specific care plan.

Second, the financial and other physical resources that a patient has access to might influence their ability to follow a care routine and can make a difference in outcomes.

Third, the quality of a patient’s' relationships to other people can also help or hinder their ability to recover from a medical problem.

From all this I hope you walk away with an appreciation of the beauty and complexity of our healthcare system from the patient perspective. We need healthcare professionals to be at their best.

And we need to increasingly become more educated, to play an active role in our own health care and to be honest with the medical team about how their treatment is working for us or if there are ways that it is not.

The examples I've used here are of people living with serious medical problems. These stories are helpful in that they describe some of these issues in a more dramatic way.

But health care for most of us, most of the time, also includes the ordinary experiences of primary care clinics. And in addition to our ability to cure challenging diseases or medical problems, we need to be better at prevention of disease, and how to stay healthy as much as possible.

What are the needs and perspective of health care professionals that help them to be successful in their work? What role do health care organizations and health care insurers play in our complex system? What are the benefits and challenges created by the larger systems in which all this is embedded?

Our medical professionals play a vital role in health care. They have training, some of which takes many years. They have experience implementing their training, and they create agreements with each other about how people in the different health care roles can work together for the best outcomes. The medical training and ways of interacting between them are also changing, and as individuals they need to keep up with those changes, testing them to make sure the changes improve things for their patients.

In the following episodes of Butterfly Arose I will do a deeper dive into the role they all play, and the challenge of doing health care well at every level.

Thank you for listening, and remember that you can find links to books, articles, videos and other online resources I mention. Just go to the written text embedded below the audio and click on the bolded words that refer to them.

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.

You can find When We Do Harm by Danielle Ofri, MD HERE.

Healthline article on multiple myeloma can be found HERE.

Another article on multiple myeloma from the Cleveland Clinic can be found HERE.

Types and origins of diagnostic errors in primary care settings by Singh, et. A;., can be found HERE.

Cognitive Interventions to Reduce Diagnostic Error by Graber, et. Al, can be found HERE.

Different, Gender Through the Eyes of a Primatologist by Frans de Waal can be found HERE.

T. A. Brennan, Incidence of Adverse Events and Negligence in Hospitalized Patients—Results of the Harvard Medical Practice Study 1 can be found here.

To Err Is Human, published by the Institutes of Medicine, can be found HERE.

An explanation of First In, First Out from the Lean Enterprises Institute can be found HERE

The Man Who Invented Gender, Engaging the Ideas of John Money by Terry Goldie can be found HERE.

You can find Nobody Needs to Know, A Memoir, by Pidgeon Pagonis HERE.

LA Times article on Dr. Money can be found HERE.

A long Salon article on Dr. Money can be found HERE.

You can find Terry Goldie’s academic profile HERE.

The Intersex Society of North America or ISNA website can be found HERE.

For what it’s worth, you can find a Wikipedia article on Dr. Money HERE.

As Nature Made Him; The Boy Who Was Raised As A Girl book by John Colapinto can be found HERE.

Pacific Center for Sex and Society has a list of articles by Dr. Milton Diamond. It can be found HERE.

The History of Clinical Psychology in Autobiography Volume II edited by C. Eugene Walker can be found HERE.

The Man Who Invented Gender, Engaging the Ideas of John Money by Terry Goldie can be found HERE.

As Nature Made Him; The Boy Who Was Raised As A Girl book by John Colapinto can be found HERE.

A National Library of Medicine article on Phimosis can be found HERE.

Fixing Sex by Katrina Karkazis can be found Here.

NIH National Library of Medicine article on phimosis can be found HERE.

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