Several years ago, while my husband lay in critical condition in an intensive care unit, I watched his intensivist and a group of medical students crowd around a laptop in the corridor outside his room. Occasionally, one would glance in his direction, and then return to the data on the screen.
I thought about a comment once made by a doctor I know who teaches at a large medical school. “When in doubt,” he said, “I tell my students to examine the patient.” His wise words rang in my ear, but I decided to leave them there for the moment and just eavesdrop to learn whatever I could about my husband’s illness.
It wasn’t long before I realized that they were puzzling over my husband’s condition, his complex medical history and gaping holes in the electronic medical record. They needed a lot more information, and I was not hesitant to provide what I could.
With a deep breath, I interrupted their conversation and offered details I thought useful about his medical history. His background was so complicated, I had a brief summary that I carried in my wallet and shared it with them. The doctors seemed hesitant at first to accept my involvement but politely listened to my recounting of my husband’s story. When I finished, they thanked me for the information and admitted it had been helpful.
The next day I was waiting for them when they came rounding. And the day after that too. Before long, I had made myself part of the team. The doctors began to explain things in terms I could understand and to ask me more questions so they could better understand my husband’s medical condition.
A few days later, the attending thought my husband was progressing enough to move him out of the ICU and onto another floor. But I was certain something was still wrong. Based on history and intuition, I was worried about an infection. I insisted on additional tests. The attending appeased me. Results that day proved me wrong. But the next day I was vindicated. There was an infection and good reason to keep him in the ICU a while longer.
The attending graciously acknowledged that I had been right, and we forged an even stronger working relationship, dealing with a series of ups and downs that followed until my husband was truly well enough to leave the ICU. On that day the attending and I parted with a warm hug and an honest appreciation for the separate but important roles we both had played in the patient’s recovery.
That wasn’t the first time I had acted as an advocate for my husband. Over the course of 24 years, he survived 14 separate hospitalizations—some for long stretches and a few for life-threatening conditions.
Once, with the advice and help of a doctor who was a family friend, I sought out a specialist to consult on my husband’s case. There were already numerous specialists on the case. But the new doctor brought a fresh perspective and helped turn around what seemed to be a grim and deteriorating situation. Another time I stepped in, preventing an orderly from taking my husband for an MRI. He has a pacemaker, and I was not about to allow the procedure, no matter what had been ordered.
Over time, I have learned how and when to speak up. Today my husband is thriving, and I believe I have played some part in a number of his recoveries. We have been lucky to have doctors who were willing to listen, accept input and discuss options. My husband is living proof that collaboration between doctors and families improves and enhances patient care.
But in today’s hospitals, building those bonds can be difficult. Patients are more likely to be seen by hospitalists, who barely know them, than by their primary care physicians. Medicare, private insurance and hospital rules all make it difficult for medical professionals to spend enough time to get to know every patient well, especially a new one. Relative value units don’t necessarily help physicians forge close relationships with their patients.
Popular literature is replete with questions for patients to consider. In his 2007 seminal book, How Doctors Think, Jerome Groopman, MD, posed a series of thoughtful questions that patients should ask their doctors, especially in the face of a challenging diagnosis. www.jeromegroopman.com
Equally important are the questions posed by doctors. But many hospital patients are too sick, too weak or just too out of it to provide concise, cogent information about their medical condition and history. And some may be too embarrassed to be completely forthcoming about such issues as incontinence, drug use or memory loss.
Family members can often be more objective and honest, providing background and context that can help doctors better understand their patients. In a hospital, where time is at premium, family members can be valuable links to critical information.
Here are 10 questions that medical professionals most likely ask their patients. But asking family members of hospital patients can help improve diagnoses, treatment and care.
1. Has the patient ever had a medical problem like this before? Is there a family history?
2. What symptoms or problems was the patient experiencing before coming to the hospital?
3. What medical procedures has the patient had in the past five years? Before that?
4. Does the patient have any allergies to medications, food or other substances? What are the signs or symptoms?
5. What medications, including over-the-counter, has the patient been taking?
6. At home, does the patient always take his/her medicine as prescribed? Does he/she sometimes skip or cut doses?
7. Does the patient smoke, have more than two alcoholic drinks a day or use recreational drugs?
8. Has the patient traveled out of the country in the past year, particularly to any developing nations? What about in the past?
9. What type of work does/did the patient do?
10. What are the patient’s plans and goals after leaving the hospital?
Ideally, many of these details are included in the patient’s medical record. But that is not always the case. Information can be incorrect, overlooked or missing. More than once I have had to correct information, particularly about prescription medications, in my husband’s medical record.
Discussion of the issues can shed important new light on the patient’s condition. Skipping medications, travel to Third World countries or occupational exposures can be harbingers of serious, perhaps even difficult-to-diagnose problems. Family members, who know their loved ones better than anyone else, can be fonts of information to help doctors better understand and treat their patients.
The Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services, developed a guide to promote stronger engagement among medical professionals, patients and families to improve outcomes in hospital safety and quality. www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html
“Working with patients and families as advisors at the organizational level is a critical part of patient and family engagement and patient- and family-centered approaches to improving quality and safety,” the guide counsels. “Patient and family advisors are valuable partners in efforts to reduce medical errors and improve the safety and quality of health care.”
Patient-centered care is becoming the norm for many physicians. In a hospital setting, patient-and-family-centered practice can make a critical difference in diagnosis and care, and sometimes even between life and death.