5
Personal Outcomes in Health Care
Thomas L. Garthwaite
The ultimate test of the quality of a health care system is whether it helps the people it intends to help. (Institute of Medicine 2001)
Over the past four years, I have retold stories of healthcare experiences of my family members and me. Each audience reacts similarly. Each listens intently, and many individuals smile or nod knowingly. At the end of the stories, I ask that anyone who has similar experiences regarding themselves or their family or friends to please raise their hands. Invariably, between one third and one half of the audience members do so.
1. My Stories . . .
1.1. My Nephew
My nephew Chris came to visit his grandmother and volunteered to trim her hedges.
He borrowed my heavy-duty hedge trimmer and did a fine job on the hedges and on his index finger. I was called, and we rushed to a nearby emergency room. The triage nurse glanced at his finger and told him to rewrap it and to sign in. We spent the next 25 minutes giving the usual demographic information and trying to convince the clerk that he was insured despite the fact that he was covered by three separate policies. We were seated and eventually called and placed in an examination room. The emergency room physician looked at the wound and informed us that all through-and-through lac- erations of the nail bed mandated a plastic surgery consultation. The plastic surgeon was paged; we later learned that he received the page just as he was getting out of his car after returning home from the same hospital. He came back to the hospital and sutured the nail bed. We went home about six hours after we left.
1.2. My Mother
My mother, 82 years old at the time, called me on a Sunday morning to tell me that she had abdominal pain and to ask me to come over and check it out.
“Of course, I’ll be right there,” was my response.
After examining her abdomen, I asked, “What do you want to wear to the hospital?”
She retorted, “I’m not going to hospital. Just let me go. Just give me something for the pain.”
55
I insisted, “Mom! No one is ‘letting you go.’ It’s just your gallbladder. It’s easy to fix!”
We drove to the emergency room. The ER intern felt her abdomen. “Gallbladder,”
he proclaimed.
The ER resident concurred, “Gallbladder.”
The ER staff physician confirmed, “Gallbladder.”
The surgery team was called. The intern on the surgery team proclaimed,
“Gallbladder.”
The surgery resident agreed, “Gallbladder.”
Finally, the staff physician examined her abdomen and said, “I’m not so sure. The findings seem more diffuse.”
Some 36 hours later, as her white count continued to rise and she continued to dete- riorate, the last film of the endoscopic retrograde cholecystopancreatography (ERCP) study showed leakage of fluid from the gallbladder into the peritoneum. Sometime during the multiple abdominal exams or during the admission ultrasound study, her gallbladder ruptured, spilling several hundred small stones and infected bile into her abdominal cavity. After emergency surgery (a cholecystectomy with T-tube placement) and several additional complications, she recovered and is doing amazing well at age 92.
1.3. My Mother-in-Law
My mother-in-law called to say that she had been placed on estrogen therapy for menopausal symptoms. Shortly after she started the estrogen, she noted swelling in her armpit, the axilla in medical speak. She wondered what I thought might be happening.
Based on my training in endocrinology, I said that I was concerned that the estrogen- sensitive tissue in that area was the breast and that I was worried that lymph nodes in her axilla were reacting to or contained breast cancer. I advised that she go to her doctors and be examined for breast cancer and have a biopsy of the swelling in her axilla taken.
She returned to her doctor who advised her that she had had a mammogram not that long ago and that rather than biopsy the swelling or repeat the mammogram, he would simply stop the estrogen. She went to another doctor who did not challenge the judgment of the first. The swelling diminished after the estrogen was stopped.
About a year later, a repeat mammogram was abnormal. At radical mastectomy, an estrogen-receptor–positive adenocarcinoma of the breast with evidence of spread to 10 of 13 axillary lymph nodes was removed.
1.4. My Wife
My wife had an upper respiratory infection that was very similar to the illness I was seeing in my co-workers and patients. When I came home from work, she would say she felt lousy and I would feel her forehead, listen to her lungs, and tell her that she had a virus and it was “going around.” Several days later, I came home from work and went upstairs to see how she was doing. She did not look good—listless, short of breath, high fever. I took her to the emergency room.
The emergency room resident came in to see her. I could tell that the resident was a little skeptical that someone with the “flu” needed to come to the emergency room.
After listening to the story and listening to her lungs, the resident suggested that we
go home. “I guess we could get a CBC and a chest x-ray,” she said in a tone that con- veyed her opinion that they would be normal.
“I really think she needs a chest film,” I said. The x-ray showed her lobar pneumo- nia and the CBC showed that her white blood cell count was markedly elevated, indi- cating a bacterial process. She responded very well to penicillin.
1.5. My Colleague
Alex was a member of my extended family—the Division of Endocrinology where I worked. He was a 42-year-old physician who had diabetes, asthma, and hypertension.
He treated himself too much but also sought advice from specialists he knew regard- ing his illnesses. Neither Alex nor the doctors he consulted felt that they were in charge of his health care. Alex noted epigastric pain on a Monday. On the following Saturday, while he was shopping at a mall with his young son, Alex collapsed and died of an acute myocardial infarction. Underappreciated by Alex and his consultants was the fact Alex’s father had died at age 42 of a myocardial infarction.
1.6. Myself
I have worn glasses since the ninth grade. In 1990, I noted that my glasses could no longer correct the vision in my right eye and that I was seeing halos around lights at night. My ophthalmologist noted a cataract in my right eye and since my best corrected vision was 20/50, we decided to have the cataract removed and a prosthetic lens inserted. In January 2001, the operation was performed and was a great success. My vision in my right eye had never been better or clearer.The yellow tint from the cataract was gone and colors were vibrant.
In May of 1991, while on business travel back to the Washington, D.C., area, I noted a blurry, dark area in the visual field of my right eye. I thought it was related to the implanted lens and thought I’d have it checked out as soon as I returned home. Two days later, the dark area expanded and a larger portion of my vision was compromised.
Since I was still in Washington, D.C., where my cataract surgery was performed, I called the ophthalmologist who had performed the cataract surgery. He saw me that morning and determined that I had a retinal detachment. He said that I was at increased risk of a retinal detachment because I had myopia and cataract surgery. I was previously unaware of my risk for retinal detachment and of the signs and symptoms related to that condition. After two surgeries and special lenses, I am now able to see 20/50 in my right eye although my vision in that eye is significantly distorted.
2. The Test of Quality
The Institute of Medicine (IOM) suggests using measures “determined by the out- comes patients desire” to define the components that constitute quality: safety, effec- tiveness, patient-centeredness, timeliness, efficiency, and equity. Further, the IOM defines outcomes in a way that goes far beyond the success of specific procedures or
“what is done to” patients to “what is accomplished for them” (p 46).
According to the IOM, desirable personal health outcomes include “improvement (and prevention of deterioration) of health status and health related quality of life, and management of physical and psychological symptoms.” In expanding the definition, the IOM incorporates “interpersonal aspects of care” as health outcomes, citing “patients’
concerns and expectations, their sense of dignity, their participation in decision making, and in some cases reduced burden on family and caregivers and spiritual well being”
(p 46).
Using the IOM’s measures, I have tried to learn what I can from the outcomes my family had. On the first set of measures, health status and management of symptoms, outcomes were varied. My nephew and wife ended up getting the care they needed, and neither was severely harmed. It took longer—and involved great risk—for my mother. Her survival was fortunate and more a testament to her toughness than to the ability of the system to properly diagnose and treat her. My mother-in-law’s diagnosis of cancer was delayed, I have some permanent visual disability, and my friend Alex died too young.
When it comes to the interpersonal aspects of care, the outcomes certainly are not what my family and I would expect. Though it was essentially harmless, the wait in the emergency department was symptomatic of a system that fails on measures of timeli- ness and efficiency. Much more seriously, it shows a system that is not focused on the patient.
3. Curing Health Care
As a physician, I have tried to learn from my own family’s stories. As I see it, there are three key lessons:
• Health care is focused on many things but frequently not on the person who is the patient.
• Most imperfections go unnoticed and/or no changes are made in the processes or systems that gave rise to the unintended outcomes. Thus, patients will continue to receive less than ideal care despite the opportunity to learn that presented itself.
• There is no way to infuse new information into the care system and to regularly apply it, regardless of whether that new information derives from new research or from knowledge gained by system failures.
A closer look at what went wrong in each case suggests that specific information systems that could help reduce variability, improve accuracy, and avoid previously made mistakes. Longitudinal, patient-owned health records would be of significant help in integrating what is known about the patient with what is known about medical science and the delivery of care.
Specifically, the care my family and I received could be improved by using informa- tion technology (IT) tools:
• Nephew: Simplify and automate registration, coverage determination, benefit coor- dination, and billing.
• Nephew, Mom, Wife: Develop and deploy smart systems to aid in triage.
• Mother-in-law, Wife: Develop and deploy smart systems to warn of dangers when certain conditions are met.
• Alex: Trigger reminders and alter probability algorithms based on the patient’s family history (and work and exposure histories).
• Self: Educational modules and checklists for completion based on condition of the patient and the risk to the patient.
We face much more than an IT challenge. Each of these tools can function only as part of larger systems. Smart systems and decision support require access to patient
data and medical knowledge, and the ability to link across time and across systems.
In The Quality Chasm, the IOM concludes that “[t]he current care systems cannot do the job.” Only a new health system can deliver high quality care—care that is safe, effective, patient-centered, timely, efficient, and equitable (IOM 2001).
Creation of a new system requires change on a massive scale, and it requires vision to guide that change. The HealthePeople concept offers this vision.
Reference
Institute of Medicine. 2001. Crossing the quality chasm: a new health system for the 21st century.
Washington, DC: National Academy Press.
