In the last episode I talked about the experiences of four people; three who are living after treatment for cancer, and one who recovered from debilitating symptoms that were at first misdiagnosed as dementia. All four stories raised important questions about the role of patients in their own recovery from medical issues. We began to look at what patients are saying they need from themselves, and from the medical system for everyone to receive high quality care.
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.
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