PERSPECTIVE GOOD PATIENTS AND"DIFFICULT PATIENTS same as other rectal exams ould have made different choic- specially designated sections of and also completely different. es than I did, the impetus for my the medical record) and reward Luckily for me, my father was a decisions lay in a trait of our (through diagnostic and billing doctor too. When I asked my crazy medical culture. When we call codes) the time that providers Kid, "he replied, "do what you patients and families "good, "or spend talking to patients and uestion. he smiled ave to do i label, we are noting and reward- I'll never know whether such I found gloves and lube. I had ing acquiescence. Too often, this changes would have altered my him roll onto his side. And after-"good"means you agree with me behavior or that of the medical ward, I took my bloody gloved and you dont bother me and you staff on the night of my father's finger out into the hallway to let me be in charge of what hap- massive intestinal bleed, and for- prove my point. pens and when. Such a defini- tunately we all acted in time. I do nurses'station holding aloft one 's know about truly good care as a vivid image I have of that night is bloody, gloved hand is not an op- collaborative process. From the not my father wobbling in the timal tactic from a professional- history that so often generates bathroom surrounded by cold, ism standpoint -but it worked. the diagnosis to the treatment hard tile and angular metal struc- a nurse followed me back into my that is the basis of care or cure, tures, or a mustard yellow bed fathers room, saw my panicked active participation of patients pan filling with bright red blood. mother holding a bedpan over- and families is essential to opti- The image is this, a worst-case flowing with blood and clots, and mal outcomes might-have-been scenario had I called for help. Within seconds, There will always be patients not been there, had I not had the room filled, and minutes later, and families who are considered medical training, had I not spo when the ICU team showed up, I high maintenance, challenging, ken up: my parents, sleepy because stood back, a daughter again or both by health care providers. it was by then late at night, snug In retrospect, what is most Among them are a few with evi- gled up together at the top of the interesting is how much more dent mental illness, but most are gurney, my mother resting her comfortable I felt performing an simply trying their best to under- head against my fathers chest, intimate procedure on my father stand and manage their own or their eyes closed, their faces re- than demanding the attention of their loved ones'illness. That we laxed. His systolic blood pressure, the professionals assigned to care sometimes feel besieged or irri- usually 130, dropping to 80 and for him. Abiding by the unspoken tated by these advocates speaks then 70. The monitors turned off rules of medical etiquette, I had to opportunities for improvement or ignored. The lights dim. A short quieted my internal alarms for in both medical culture and the nap and they'd feel better. A lit more than 2 hours. Instead, I had health care system. Culturally, we tle rest and maybe it would be considered how doctors and nurs- could benefit from a lens shift time to go home es feel about and treat so-called toward seeing more-vocal patients Disclosure forms provided by the author pushy or"difficult"families, and and families as actively engaged at neim. org. are available with the full text of this article as a result I had prioritized want- in their health care, presenting ing us to be seen as a"good pa- new, potentially important infor- From the Department of Medicine, Divisio tient"and "good family"over be- mation, and expressing unmet Francisco. san francisco ing a good doctor-daughter care needs. At the systems level Do:101056/ NEJMp1303057 Although many physicians we need to both count (using copyright e 2013 Massachusetts Medical Society N ENGLJ MED 369; 9 NEJM. ORG AUGUST 29, 2013n engl j med 369;9 nejm.org august 29, 2013 PERSPECTIVE 797 same as other rectal exams — and also completely different. Luckily for me, my father was a doctor too. When I asked my crazy question, he smiled. “Kid,” he replied, “do what you have to do.” I found gloves and lube. I had him roll onto his side. And after￾ward, I took my bloody gloved finger out into the hallway to prove my point. I realize that walking to the nurses’ station holding aloft one’s bloody, gloved hand is not an op￾timal tactic from a professional￾ism standpoint — but it worked. A nurse followed me back into my father’s room, saw my panicked mother holding a bedpan over￾flowing with blood and clots, and called for help. Within seconds, the room filled, and minutes later, when the ICU team showed up, I stood back, a daughter again. In retrospect, what is most interesting is how much more comfortable I felt performing an intimate procedure on my father than demanding the attention of the professionals assigned to care for him. Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours. Instead, I had considered how doctors and nurs￾es feel about and treat so-called pushy or “difficult” families, and as a result, I had prioritized want￾ing us to be seen as a “good pa￾tient” and “good family” over be￾ing a good doctor-daughter. Although many physicians would have made different choic￾es than I did, the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and reward￾ing acquiescence. Too often, this “good” means you agree with me and you don’t bother me and you let me be in charge of what hap￾pens and when. Such a defini￾tion runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to opti￾mal outcomes. There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evi￾dent mental illness, but most are simply trying their best to under￾stand and manage their own or their loved ones’ illness. That we sometimes feel besieged or irri￾tated by these advocates speaks to opportunities for improvement in both medical culture and the health care system. Culturally, we could benefit from a lens shift toward seeing more-vocal patients and families as actively engaged in their health care, presenting new, potentially important infor￾mation, and expressing unmet care needs. At the systems level, we need to both count (using specially designated sections of the medical record) and reward (through diagnostic and billing codes) the time that providers spend talking to patients and families. I’ll never know whether such changes would have altered my behavior or that of the medical staff on the night of my father’s massive intestinal bleed, and for￾tunately we all acted in time. I do know that 8 years later, the most vivid image I have of that night is not my father wobbling in the bathroom surrounded by cold, hard tile and angular metal struc￾tures, or a mustard yellow bed￾pan filling with bright red blood. The image is this, a worst-case might-have-been scenario had I not been there, had I not had medical training, had I not spo￾ken up: my parents, sleepy because it was by then late at night, snug￾gled up together at the top of the gurney, my mother resting her head against my father’s chest, their eyes closed, their faces re￾laxed. His systolic blood pressure, usually 130, dropping to 80 and then 70. The monitors turned off or ignored. The lights dim. A short nap and they’d feel better. A lit￾tle rest and maybe it would be time to go home. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Department of Medicine, Division of Geriatrics, University of California, San Francisco, San Francisco. DOI: 10.1056/NEJMp1303057 Copyright © 2013 Massachusetts Medical Society. “Good” Patients and “Difficult” Patients